Chronic Diseases and Injuries in Canada Inside this issue

Chronic Diseases and Injuries in Canada Inside this issue
Chronic Diseases and
Injuries in Canada
Volume 31 · Number 4 · September 2011
Inside this issue
141 Screen-based sedentary behaviours among a nationally
representative sample of youth: are Canadian kids
couch potatoes?
S. T. Leatherdale, R. Ahmed
147 Priority issues in occupational cancer research:
Ontario stake-holder perspective
K. Hohenadel, E. Pichora, L. Marrett, D. Bukvic, J. Brown, S. A Harris,
P. A. Demers, A. Blair
152 A review of screening mammography participation
and utilization in Canada
G. P. Doyle, D. Major, C. Chu, A. Stankiewicz, M. L. Harrison, L. Pogany,
V. M. Mai, J. Onysko
157 The prevalence of chronic pain and pain-related interference
in the Canadian population from 1994 to 2008
M. L. Reitsma, J. E. Tranmer, D. M. Buchanan, E. G. Vandenkerkhof
165 Can we use medical examiners’ records for suicide
surveillance and prevention research in Nova Scotia?
L. A. Campbell, L. Jackson, R. Bassett, M. J. Bowes, M. Donahue,
J. Cartwright, S. Kisely
172 Online resources to enhance decision-making in public health
D. Finkle-Perazzo, N. Jetha
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Screen-based sedentary behaviours among a nationally representative sample of youth: are Canadian kids couch potatoes?
S. T. Leatherdale, PhD (1); R. Ahmed, PhD (1,2)
This article has been peer reviewed.
Abstract
Purpose: To determine the percentage of Canadian youth meeting screen-time guidelines
and to identify characteristics associated with different screen-time behaviours.
Methods: Using nationally representative data collected from the 2008/2009 Youth Smoking
Survey (YSS), we analyzed three screen-time behaviours, cigarette smoking, weekly spending
money, self esteem, region and grade by sex, and conducted four logistic regression models
to examine factors associated with more than 2 hours a day of sedentary screen time.
Results: Of 51 922 Canadian youth in grades 6 to 12, 50.9% spent more than 2 hours per day
in screen-based behaviours. The average daily screen time was 7.8 (± 2.3) hours. Males
and current smokers were more likely to report over 2 hours per day watching TV and videos
or playing video games, whereas students in higher grades and those with weekly spending
money were more likely to report playing or surfing on a computer. Youth with higher
self-esteem were less likely to report spending over 2 hours per day in each of the three
screen-time behaviours examined.
to spend time in these types of screen-based
behaviours if they are male,5,6,9-11 older,5,9,11
from a low income family9 or if they engage
in risk behaviours such as smoking.12 Given
that this is also a developmental period when
youth’s self-esteem is associated with the
likelihood of their engaging in health-promoting or inhibiting behaviours,13 it is important to determine if screen time is associated
with self-esteem. Considering that excessive
screen time is associated with an increased
risk of obesity1,3 and engaging in other risk
behaviours,5 a better understanding of different screen-time behaviours would provide
valuable insight for targeting or tailoring
interventions to prevent or reduce screen
time among youth populations.
Conclusion: Developing a better understanding of the factors associated with more hours
of screen time is required to develop and target interventions that reduce screen-time
behaviours.
The purpose of our study was to determine
the percentage of Canadian youth who
exceed the recommended screen time guideline and to identify characteristics associated with different screen-time behaviours.
Keywords: sedentary behaviour, youth/child, screen time, Youth Smoking Survey, tobacco,
Keywords: surveillance, self esteem
Methods
Introduction
Screen-based sedentary behaviours likely
have a negative impact on many different
aspects of youth health and development.1-2
For instance, the increasing trend in youth
obesity in North America coincides with an
increasing prevalence of youth reporting
over 3 hours of screen time per day.3 The
American Academy of Pediatrics4 has developed guidelines that recommend limiting
children’s total entertainment screen time
to no more than 1 to 2 hours of quality
programming per day. Considering that
few Canadian youth currently meet these
recommendations,5-6 activities designed to
reduce sedentary screen time among youth
should be a public health priority.
A substantial body of research has examined characteristics associated with watching television (TV).3,6-8 More recently, other
types of sedentary screen-time behaviours
have also garnered attention, for example,
playing video games and using computers.5,6,8 It seems that youth are more likely
Our study used nationally representative data
collected from 51 922 students in grades 6 to
12 as part of the 2008/2009 Canadian Youth
Smoking Survey (YSS).14 In brief, the target
population for this study consisted of all
young Canadian residents in grades 6 to 12
attending public and private secondary
schools in 10 Canadian provinces. The YSS
was administered to students during class
time, and participants were not compensated.
To reduce demands on schools and to increase student participation rates, the YSS used
active information with passive consent.
Author references
1. Department of Health Studies and Gerontology, University of Waterloo, Waterloo, Ontario, Canada
2. Department of Statistics and Actuarial Science, University of Waterloo, Waterloo, Ontario, Canada
Correspondence: Scott T. Leatherdale, Department of Health Studies and Gerontology, University of Waterloo, 200 University Avenue West, Waterloo ON N2L 3G1
Tel.: (519) 888-4567 ext 37812; Fax: (519) 886-6424; Email: sleather@uwaterloo.ca
141
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
The YSS asked respondents to report the
average number of hours per day that they
spent (a) watching TV or videos,* (b) playing
video games and (c) playing games or
surfing the Internet on a computer. Respondents could choose from “none,” “less than
1 hour a day,” “1 to 2 hours a day,” “more
than 2 hours a day but less than 5 hours
a day,” or “5 or more hours a day” for
each behaviour. Consistent with existing
research8,15 and guidelines,4 we grouped
responses for each construct into two categories (≤ 2 hours/day, > 2 hours/day) for
each individual activity and for the total
screen time. We calculated a conservative
estimate of the mean screen time per day
based on the lowest value of each response
category reported. The YSS also collected
information on demographics, cigarette smoking behaviour, weekly spending money
and self-esteem. Specific details on these
measures are available elsewhere.†
13.7% (n = 372 132) reported playing
video games for over 2 hours per day (mean
2.1 ± 1.1 h/d) and 29.9% (n = 814 116)
reported playing or surfing on a computer for
Table 1
Descriptive statistics for youth in the Youth Smoking Survey by sex, 2008/2009, Canada
Male
(n = 1 388 139)
%a
Youth
Female
(n = 1 460 341)
%a
Total
(n = 2 848 480)
%a
Grade
6
7
8
9
10
11
12
13.1
13.8
14.3
14.9
15.5
14.9
13.5
13.6
14.2
14.5
14.8
14.8
14.7
13.4
13.3
14.0
14.4
14.8
15.2
14.8
13.5
90.1
8.9
1.0
92.5
6.4
1.1
91.3
7.7
1.0
21.9
38.4
24.1
15.6
19.0
41.4
27.1
12.5
20.5
39.8
25.6
14.1
1.8
23.3
16.2
20.6
22.5
15.6
3.3
38.4
17.2
16.4
15.3
9.4
2.6
30.6
16.7
18.6
19.0
12.5
6.7
19.3
41.4
18.8
13.8
7.2
19.4
40.5
19.0
13.9
6.9
19.4
40.9
18.9
13.9
68.8
31.2
76.6
23.4
71.7
28.3
46.4
53.6
70.8
29.2
96.6
3.4
68.3
31.4
52.0
48.0
69.8
30.2
86.3
13.7
70.1
29.9
49.1
50.9
Smoking status
Never smoker
Current smoker
Former smoker
We examined descriptive analyses of our
three sedentary behaviour constructs as
well as cigarette smoking behaviour, weekly
spending money, self-esteem, region and
grade by sex. We then conducted four logistic
regression models to examine factors associated with watching TV or videos, playing
video games, and playing or surfing on a
computer for more than 2 hours a day per
each behaviour as well as total screen time
for more than 2 hours a day. Survey weights
for descriptive statistics were used to adjust
for differential response rates across regions
or groups; the statistical package SAS version 8.02 was used for all analyses.16
Weekly spending money, $
0
1–20
21–100
> 100
Self-esteem (derived score from 0 to 12)
0–4
5–8
9
10
11
12
Region
Atlantic Canadab
Quebec
Ontario
Prairiesc
British Columbia
Results
Respondent characteristics
Screen-time behaviour (average h/d)
Watching TV or videosd
The study sample was 48.7% male and
51.3% female, representing 1 388 139
boys and 1 460 341 girls. Among students
in grades 6 to 12, 30.2% (n = 836 518)
rep-orted watching over 2 hours of TV
or videos per day (mean 3.0 ± 0.9 h/d);
* Video time refers to TV series or movies watched at
home, on video tape, DVD or Blu-ray. In our preliminary research validating the comprehension of
these measures with youth populations, the youth
we sampled interpreted the term “video” to refer to
any type of movie or TV series watched at home.
over 2 hours per day (mean 2.9 ± 1.1 h/d).
Overall, 50.9% (n = 1 439 311) of Canadian
youth spent over 2 hours per day on total
screen time (Table 1).
Playing video games
Playing/surfing on a computer
Total screen time (all behaviours)
≤2
>2
≤2
>2
≤2
>2
≤2
>2
Abbreviations: CI, confidence interval; d, day; h, hour; n, sample size.
Weighted population estimate.
New Brunswick, Nova Scotia, Prince Edward Island, Newfoundland and Labrador.
c
Alberta, Saskatchewan, Manitoba.
d
“Videos” refers to TV series or movies watched at home, on video tape, DVD or Blu-ray.
a
b
† www.yss.uwaterloo.ca
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
142
Figure 1
Prevalence of sedentary behaviours by region, Canada, 2008/2009
% of Canadian youth in grades 6 to 12
55
54.4
52.5
54.4
50
45.3
45
42.3
40
35
32.2
29.9
30
34.1
32.5
32.8
32.4
27.1
25
23.1
25.0
24.0
20
14.4
15
14.4
13.3
14.0
11.8
10
5
0
Atlantic Canada *
Quebec
> 2 hours per day watching TV or videos
> 2 hours per day playing/surfing on a computer
Ontario
Prairies †
British Columbia
> 2 hours per day playing video games
> 2 hours per day total screen time
Source: 2008-2009 Canadian Youth Smoking Survey. * New Brunswick, Nova Scotia, Prince Edward Island, Newfoundland and Labrador. † Alberta, Saskatchewan, Manitoba.
Table 2
Logistic regression analyses examining characteristics associated with screen-time behaviours among youth (grades 6 to 12) in the Youth
Smoking Survey, 2008/2009, Canada
Characteristic
Screen-time behaviour, adjusted ORa (95% CI)
(n = 51 922)
Watching TV or videosb
> 2h/d vs. ≤ 2 h/dc
Playing video games
> 2h/d vs. ≤ 2 h/dd
Playing/surfing on a computer
> 2h/d vs. ≤ 2 h/de
Total screen time
> 2h/d vs. ≤ 2 h/df
Sex
Female
Male
1.00
1.16 (1.12–1.22)***
1.00
10.18 (9.41–11.01)***
1.00
1.00 (0.97–1.04)
1.00
1.46 (1.41–1.52)
Grade
6
7
8
9
10
11
12
1.00
1.01 (0.94–1.09)
0.99 (0.91–1.07)
0.83 (0.77–0.90)***
0.82 (0.76–0.89)***
0.65 (0.59–0.70)***
0.71 (0.65–0.77)***
1.00
1.14 (1.02–1.28)*
1.47 (1.32–1.63)***
1.20 (1.07–1.34)**
0.99 (0.89–1.11)
0.88 (0.78–0.99)*
0.59 (0.52–0.68)***
1.00
1.38 (1.26–1.51)***
1.88 (1.73–2.05)***
1.94 (1.78–2.11)***
1.86 (1.71–2.03)***
1.77 (1.62–1.94)***
1.80 (1.64–1.98)***
1.00
1.16 (1.08–1.25)***
1.46 (1.36–1.57)***
1.32 (1.22–1.42)***
1.18 (1.09–1.27)***
1.10 (1.02–1.19)*
1.09 (1.01–1.18)*
Smoking status
Never smoker
Current smoker
Former smoker
1.00
1.15 (1.06–1.24)***
1.27 (1.01–1.58)*
1.00
1.23 (1.10–1.37)***
1.26 (0.92–1.72)
1.00
1.00 (0.92–1.09)
0.61 (0.47–0.78)***
1.00
0.99 (0.92–1.07)
0.89 (0.72–1.09)
Weekly spending money, $
0
1–20
21–100
> 100
1.00
0.88 (0.84–0.93)***
0.89 (0.84–0.93)***
0.81 (0.75–0.88)***
1.00
0.86 (0.80–0.93)***
0.81 (0.74–0.88)***
0.98 (0.88–1.09)
1.00
1.06 (1.00–1.12)*
1.14 (1.07–1.22)***
0.99 (0.91–1.07)
1.00
0.95 (0.90–0.99)*
0.97 (0.91–1.02)
0.80 (0.74–0.86)***
Self-esteem, each 1 unit increase
0.91 (0.90–0.92)***
0.88 (0.87–0.90)***
0.85 (0.84–0.86)***
0.85 (0.84–0.86)***
Abbreviations: CI, confidence interval; d, day; h, hour; n, sample size; OR, odds ratio.
Odds ratios controlling for region and adlusted for all other variables in the table.
“Videos” refers to TV series or movies watched at home, on video tape, DVD or Blu-ray.
c
1 is the equivalent of > 2 hours watching TV or videos per day (n = 12 671), 0 is the equivalent of ≤ 2 hours watching TV or videos per day (n = 30 838).
d
1 is the equivalent of > 2 hours playing video games per day (n = 5818), 0 is the equivalent of ≤ 2 hours playing video games per day (n = 36 724).
e
1 is the equivalent of > 2 hours playing/surfing on a computer per day (n = 12 375), 0 is the equivalent of ≤ 2 hours playing/surfing on a computer per day (n = 30 298).
f
1 is the equivalent of > 2 hours total screen time per day (n = 22 123), 0 is the equivalent of ≤ 2 hours total screen time per day (n = 22 415).
* p < .05 ** p < .01 *** p < .001
a
b
143
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
The prevalence of sedentary behaviours across
regions varied substantially (see Figure 1).
For instance, the prevalence of students reporting watching over 2 hours of TV or
videos per day or playing or surfing on a
computer was substantially lower in the
Prairies and British Columbia than in the rest
of Canada. Conversely, the prevalence of
students reporting watching over 2 hours
of total screen time per day was highest in
Quebec and Ontario.
Figure 2
Model-based odds ratios for spending more than 2 hours per day watching TV,
playing video games, or playing/surfing on a computer as a function of self-esteem
among students in grades 6 to 12, Canada, 2008/2009
8
7
6
Odds Ratio
Boys were more likely than girls to report
spending over 2 hours per day watching TV
or videos (c2 = 23.3; df = 1; p < .001) and
playing video games (c2 = 4164.0; df = 1;
p < .001), whereas girls were more likely
than boys to report spending over 2 hours
per day playing or surfing on a computer
(c2 = 66.2; df = 1; p <.001). Boys were also
more likely than girls to spend over 2 hours
per day in total screen time (c2 = 158.6;
df = 1; p < .001). Overall, students spent an
average of 7.8 (± 2.3) hours per day in these
three sedentary activities (boys 8.3 ± 2.5
h/d; girls 7.3 ± 2.1 h/d).
5
4
3
2
1
12
11
10
9
8
7
6
5
4
3
2
1
0
Self Esteem Index (lower values represent lower self esteem)
2 hours per day watching TV or videos
2 hours per day playing video games
2 hours per day playing/surfing on a computer
2 hours per day total screen time
Source: 2008-2009 Canadian Youth Smoking Survey
Watching TV or videos. Compared to never
smokers, both current smokers and former
smokers were more likely to report watching
TV or videos (movies on video tape, DVD or
Blu-ray) for over 2 hours per day (Table 2).
Conversely, relative to students in grade 6,
students in grades 9, 10, 11 or 12 were less
likely to report watching TV or videos for
over 2 hours per day. Compared to students
with no weekly spending money, the odds
of reporting watching over 2 hours of TV or
videos per day decreased among students
with weekly spending money. Students with
lower self-esteem were more likely to report
watching over 2 hours per day of TV or videos than students with higher self-esteem
(Figure 2).
Playing video games. Compared to students in grade 6, students in grades 7, 8
and 9 were more likely to report playing
video games for over 2 hours per day, and
students in grades 11 and 12 were less
likely to report playing video games for
over 2 hours per day. Compared to students with no weekly spending money,
the odds of reporting over 2 hours of video
games per day decreased among students
with $1 to $100 weekly spending money.
Current smokers were more likely than
never smokers to report playing video
games for over 2 hours per day. Students
with lower self-esteem were more likely
to report playing video games for over 2
hours per day than students with higher
self-esteem (Figure 2).
Playing or surfing the Internet on a computer. Compared to students in grade 6,
students in higher grades were more likely
to report playing or surfing on a computer
for over 2 hours per day. Compared to students with no weekly spending money, the
odds of reporting playing or surfing on a
computer for over 2 hours per day
increased among those with $1 to $100
weekly spen-ding money. Compared to
never smokers, former smokers were less
likely to report playing or surfing on a computer for over 2 hours per day. Students
with lower self-esteem were more likely
to report playing or surfing on a computer
for over 2 hours per day than students with
higher self-esteem (Figure 2).
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
144
Total screen time. Relative to students in
grade 6, students in higher grades were more
likely to report over 2 hours of total screen
time per day. Compared to students with no
weekly spending money, the odds of reporting over 2 hours per day of total screen time
decreased among students with over $100
weekly spending money. Smoking status was
not significantly associated with total screen
time. Students with lower self-esteem were
more likely to report over 2 hours per day of
total screen time than students with higher
self-esteem (Figure 2).
Discussion
Developing a better understanding of screentime behaviours and the factors associated
with them can be used to inform the development of prevention programming among
youth populations. This study showed that
grade 6 to 12 students in our nationally
representative sample are very involved
in screen-time behaviours; these data also
support the recommendation that intervention efforts to reduce screen time must
begin prior to adolescence.17 Given that our
sample demographics are consistent with
other North American youth populations,18,19
these findings are fairly representative within
that context.
Our study showed that the majority—over
1.4 million—of Canadian youth in grades
6 to 12 exceeded the recommended guidelines of less than 2 hours of screen time
per day.4 Even when using a conservative
estimate of average screen time, the youth
in our sample exceeded existing guidelines
by over 5 hours per day; the daily average
time for each individual screen-based behaviour also exceeded recommendations for
total screen time. A substantial number of
youth exceeded the guideline recommendations based on their daily time spent in
a single screen-time behaviour, consistent
with previously published Canadian data
from 2001/2002.6 This suggests that there is
substantial room for decreasing screen time
by at least 90 minutes per day as recommended by Canada’s Physical Activity
Guides for Children and Youth.20 However,
considering that screen time is a behaviour
distinct from a lack of physical activity15,21,22
and that many youth with high levels of
screen time are also highly active,21 those
behaviour-specific interventions that are
designed to reduce screen time by promoting physical activity may be inadequate.
Consistent with earlier research,5,6,9-11 males
were more likely to report more screen time
than females. However, in our study this
was not consistent across the three screenbased behaviours. Although boys were more
likely to watch TV or videos and play video
games for over 2 hours per day in the predictive models, the sex of the respondent
was not significantly associated with time
spent surfing or playing on a computer.
Similarly, although earlier research suggested that older students are more likely
to report more screen time than younger
students,9 we found that students in higher
grades were more likely to play/surf on a
computer for over 2 hours per day but less
likely to watch TV or videos or play video
games for over 2 hours per day compared
to grade 6 students. These findings suggest
that further research is required to evaluate
the impact of sex- or grade-specific interventions to reduce screen time among youth.
To the best of our knowledge, this is the
first study to identify a significant association between self-esteem and screen-time
behaviour, contradicting previous research
that suggested self-esteem was not associated with sedentary behaviour.11 Since
youth who are involved in sports and clubs
after school have higher self-esteem than
those who are not engaged in such activities,13 and rates of screen-time behaviours
are highest after school,23 interventions
should be designed to engage students in
extracurricular activities that could reduce
their screen time after school and improve
their self-esteem. If effective, such interventions could be very important as low
self-esteem and screen time have both
been linked to numerous negative health
outcomes among youth, such as smoking
and other substance abuse.12,13
Earlier research suggested that youth with
lower income parents are more likely to
report more than 2 hours of screen time per
day than youth with higher income parents.9 We found that the disposable income
of students is associated with time spent in
all three screen-based behaviours, but the
direction of the association is not the same
across all behaviours. This suggests that a
tailored approach to reducing screen time
may be required for youth populations
based on their disposable income. Consistent
with previous research,12 we also found that
current smokers tended to spend more time
watching TV and videos and playing video
games. It would be useful to evaluate the
impact of reducing sedentariness on the
smoking behaviour of this sub-population
of at-risk youth.
Limitations
This study had several limitations. Since
no data on physical activity or obesity exist
among the YSS measurement tools, we were
unable to examine the association between
screen time and these correlates. The measure used for sedentary behaviour in the
2008/2009 YSS do not allow us to calculate
respondents’ total sedentary time, or to
determine the time spent in different sedentary behaviours on weekdays versus weekends. Although the 2008/2009 YSS collected
a measure of time spent reading for fun, we
did not include this in our research because
145
education stakeholders consider reading for
fun constructive due to its positive impact
on educational performance rather than
lacking a health benefit for youth. Further,
causal relationships cannot be inferred from
these cross-sectional data. Data were also
based on self-reports so the validity of the
responses may be questionable; however,
honest reporting was encouraged by ensuring confidentiality during data collection.
Conclusion
With the high prevalence of Canadian
youth exceeding recommended guidelines
for screen time, we need to improve our
understanding of the reasons for these sedentary behaviours and their correlates. This
may be especially pertinent if the rise in
obesity among youth populations is in fact
influenced by an overall decrease in energy
expenditure due to increased sedentary
behaviour. Considering that most nationally representative surveillance data do not
monitor different sedentary behaviours,24
the insight gained from this study provides a better understanding of the prevalence of different screen-time behaviours
among Canadian youth as well as insight
for tailoring future screen-time reduction
interventions.
Acknowledgement
Dr. Scott Leatherdale is a Cancer Care
Ontario Research Chair in Population
Studies. The 2008/2009 Youth Smoking
Survey is a product of a pan-Canadian
capacity building project that includes
Canadian researchers from all provinces and
provides training opportunities for university students at all levels. Production of this
paper was made possible through a financial contribution from Health Canada. The
views expressed herein do not necessarily
represent the views of Health Canada.
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Priority issues in occupational cancer research:
Ontario stakeholder perspectives
K. Hohenadel, MSc (1); E. Pichora, MSc (2); L. Marrett, PhD (1,2,3); D. Bukvic, MPH (1); J. Brown, MSOD (1);
S. A. Harris, PhD (1,2,3); P. A. Demers, PhD (1,2,3); A. Blair, PhD (1)
This article has been peer reviewed.
Abstract
Introduction: Workers are potentially exposed to known and suspected carcinogens in
the workplace, many of which have not been fully evaluated. Despite persistent need,
research on occupational cancer appears to have declined in recent decades. The formation
of the Occupational Cancer Research Centre (OCRC) is an effort to counter this downward
trend in Ontario. The OCRC conducted a survey of the broad stakeholder community to
learn about priority issues on occupational cancer research.
Methods: The OCRC received 177 responses to its survey from academic, health care,
policy, industry, and labour-affiliated stakeholders. Responses were analyzed based on
workplace exposures, at-risk occupations and cancers by organ system, stratified by
respondents’ occupational role.
Discussion: Priority issues identified included workplace exposures such as chemicals,
respirable dusts and fibres (e.g. asbestos), radiation (e.g. electromagnetic fields), pesticides,
and shift work; and occupations such as miners, construction workers, and health care
workers. Insufficient funding and a lack of exposure data were identified as the central
barriers to conducting occupational cancer research.
Conclusion: The results of this survey underscore the great need for occupational
cancer research in Ontario and beyond. They will be very useful as the OCRC develops
its research agenda.
Keywords:cancer, occupation, workplace, consultation, Ontario
Introduction
The International Agency for Research on
Cancer (IARC) has classified approximately
60 workplace agents as definite or probable
human carcinogens and listed more than
100 as possible occupational carcinogens.1
Based on initial estimates from the CAREX
(CARcinogen EXposure) Canada project,2
hundreds of thousands of Ontario workers are
currently exposed to known and suspected
carcinogens. This population continues to
grow, so more will be potentially exposed.
Although the precise number of occupational cancers in Canada is not known,
between 4% and 10% of cancer deaths in
developed countries may be due to preventable occupational exposures.3
Despite remarkable success in identifying
human carcinogens from occupational studies,1 efforts to identify and characterize
potential carcinogens in the workplace have
lessened in the past few decades.4,5,6 New
research initiatives are needed to identify
undetected carcinogens and better characterize suspected ones, determine which
workplaces are affected, estimate the number of workers exposed to these agents and
which cancers they cause, and develop and
evaluate prevention efforts.3,6
The Occupational Cancer Research Centre
(OCRC) was launched in early 2009 to
address these needs in Ontario. The Centre
is devoted to identifying carcinogens and
preventing and ultimately eliminating exposures to them in the workplace by conducting surveillance and etiological and intervention research and promoting knowledge
transfer. The OCRC is funded by Cancer Care
Ontario (CCO), Ontario’s cancer agency;
the Ontario division of the Canadian Cancer
Society (CCS), a non-profit organization; and
the Workplace Safety and Insurance Board
(WSIB), Ontario workers’ compensation
board. The Centre was developed in collaboration with United Steelworkers, a workers’ union. WSIB also provides funding for
several other research centres focused on
other areas of occupational health including
the Institute for Work and Health (IWH), the
Centre for Research Expertise in Occupational
Disease (CREOD) and the Centre of Research
Expertise for the Prevention of Musculoskeletal Disorders (CRE-MSD).
An extensive and varied stakeholder community also supports the OCRC: academics
and researchers, labour unions and workers, employers, health care practitioners,
policy makers and advocates, health and
safety specialists and industrial hygienists,
and members of the public with a general
interest in occupational health.
Author references
1. Occupational Cancer Research Centre, Toronto, Ontario, Canada
2. Cancer Care Ontario, Toronto, Ontario, Canada
3. Dalla Lana School of Public Health, University of Toronto, Toronto, Ontario, Canada
Correspondence: Karin Hohenadel, Occupational Cancer Research Centre, c/o Cancer Care Ontario, 505 University Ave., 14th floor, Toronto, ON M5G 1X3; Tel.: (416) 971-9800 x 3860;
Fax: (416) 971-6888; Email: karin.hohenadel@cancercare.on.ca
147
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
Research organizations traditionally employ
a variety of strategies to determine priorities
in occupational health research, including
reviews of published literature, standard
expert consultation, and, commonly, rating
systems used to reach consensus on priority
topics among experts.7,8,9,10 Since the OCRC
was created, in part, to respond to the needs
of the broad stakeholder community, we
consider it important for input during the
development of a research strategy. As a
result, one of the Centre’s first undertakings
was to consult with stakeholders interested
in the prevention of occupational cancer;
our aim was to understand their views of
priorities for occupational cancer research
in Ontario and to use this information, along
with known gaps in our understanding of
the carcinogenic process, to formulate a comprehensive research agenda for the OCRC.
The OCRC stakeholder consultation consisted
of an online survey of the stakeholder community in Ontario, as well as those living
or working elsewhere who have a connection to the Ontario community, and targeted
follow-up interviews with a small sample
of survey respondents to provide additional
input. The results of the online survey are
the focus of this paper.
Methods
Survey
The OCRC informed individuals with an
interest in occupational cancer research in
Ontario of the survey. The survey included a
series of open-ended questions on respondents’ views of priority issues in occupational
cancer research, perceived barriers to occupational cancer research and the potential
solutions to these barriers, types of research
currently being conducted, and ways in
which stakeholders would like to engage
with the Centre.* Information on the geographical location, occupational role and
workplace affiliation of respondents was also
collected through multiple-choice questions.
The survey protocol and questionnaire were
developed in conjunction with the OCRC
Steering Committee and Scientific Advisory
Committee. The Office of Research Ethics at
the University of Toronto determined that
the project was exempt from ethics review.
Method of implementation
The online survey, created using SurveyMonkey, was available for completion from
June 6 to July 25, 2009. A paper copy was
also available on request at the same time.
The survey was publicized through a distribution list created by the Centre that included
established partners from our funders and
partners, academia, industry, labour unions,
worker organizations, health care institutions
and government organizations. To ensure that
the distribution list included active researchers in the field, the Centre performed a scan
of research on occupational cancer funded
by seven relevant Canadian funding agencies
between 2004 and 2009. Because the Centre
wanted the survey to be distributed as widely
as possible, stakeholders who received the
survey were encouraged to forward the survey link to others in their network. For this
reason, it is unclear how many individuals
were invited to participate.
a large number of variables, leaving 177
surveys for analysis. Most respondents
(52%) were directed to the survey link
by an email from the OCRC staff. Another
large group (24%) learned about it from
a colleague or co-worker. One respondent
found the survey link on the OCRC website independently. The remainder (24%)
received the link from other groups, organizations or industries.
Table 1
Characteristics of OCRC
stakeholder survey respondents
(N = 177)
Characteristic
Geographic locationa
Canada
Ontario
British Columbia
Alberta
Manitoba
Nova Scotia
Quebec
New Brunswick
Newfoundland
and Labrador
International
Unspecified
Analysis
With the guidance of the interim director,
two research associates grouped responses
to open-ended questions by theme before
tabulating frequencies. We grouped exposures
based on the listing in Siemiatycki et al.,1
occupations according to the 2000 Standard
Occupational Classification,11 and cancers
by organ system. We calculated frequencies
using the statistical package SAS version 9.2
(SAS Institute Inc.)
Researcher/scientist
Health and
safety specialist
Industrial hygienist
Interested citizen/
advocate
Health practitioner
Policy analyst
Knowledge
translation specialist
Worker
Employer
Academic institution
Government
Labour union
Non-governmental
organization
Industry
Health and safety
organization
Health care organization
Unaffiliated
148
8
25
4.5
14.1
52
47
29.4
26.6
25
21
14.1
11.9
14
13
12
7.9
7.3
6.8
12
5
6.8
2.8
45
24
23
21
25.4
13.6
13.0
11.9
18
15
10.2
8.5
14
6
7.9
3.4
Percentages may not add up to 100 due to rounding.
Respondents were able to select more than one
occupational role and more than one occupational
affiliation.
a
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
71.8
2.3
1.7
1.7
1.7
1.1
0.6
0.6
Occupational affiliationb
Results
* The survey questionnaire is available upon request.
127
4
3
3
3
2
1
1
Occupational roleb
For comparison, we also stratified responses
by respondents’ occupational role. To do this,
we classified respondents who selected more
than one role into the group that was first in
the following pre-determined order: worker,
researcher/scientist, health and safety specialist and industrial hygienist, health care
practitioner, and interested citizen/advocate. We did not include respondents who
did not indicate their occupational role
(n = 17) or did not fit within these groups
(n = 20) in the stratified analyses.
Of the 192 survey responses received, we
excluded 15 because values were missing on
Percent of
Number,
respondents,
n
%
b
Respondent characteristics
Table 2
Priority research issues identified by survey respondents by exposure category,
occupation group and cancer site
The majority of respondents (72%) came
from Ontario, nearly 10% came from other
provinces in Canada, including British
Columbia, Alberta, Manitoba, Nova Scotia,
Quebec, New Brunswick and Newfoundland
and Labrador, and about 5% came from
other countries. Though the largest proportion of respondents identified themselves
as either researchers and scientists from
academic institutions or else health and
safety specialists, there were a variety of
occupational roles and affiliations among
them (Table 1).
Characteristic
Exposure category
Priority issues in occupational
cancer research
Exposures. We identified nearly 100 workplace exposures of interest at various levels
of specificity (summarized in Table 2). These
included a mix of well-established carcinogens, such as asbestos and benzene, and
emergent issues, such as shift work and
nano-technology. Several exposures identified by respondents have not been fully
evaluated in relation to cancer, and for some
a causal link may be unlikely.
Commonly listed exposuresb
Chemicals
Respirable dusts and fibres
Radiation
30
27
24
Shift work
Pesticides
Nanomaterials
Exhaust
Metals and metal compounds
Work environment
Solvents
Wood, fossil fuels and oils
Pharmaceuticals
Plastic and rubber
Food preparation exposures
16
15
14
14
13
12
9
7
4
4
2
—
Asbestos, fiberglass, silica
Electromagnetic fields, nuclear, cell phone,
computer, sun
—
—
—
Diesel, gas
—
Indoor air, environmental tobacco smoke
Solvents, benzene
—
Antineoplastic drugs
—
—
Major occupation group
Construction and extraction
Health care
Production
Protective services
Farming, fishing, forestry
Installation, maintenance, repair
Building and grounds cleaning
Transportation
Computer and mathematics
Food preparation and serving
Business and financial
Personal care and service
Responses stratified by respondents’ occupational role showed a similar concern for
several broad types of exposures. All groups
identified fuels and engine exhausts, contaminated air and water, and asbestos; all
groups, except health practitioners, identified chemicals (in general); only researchers
and health and safety specialists identified
nanoparticles, but nevertheless listed these
frequently; and all groups, except workers
and interested citizens, frequently listed
shift work.
Occupations. Many respondents proposed
occupations as a research subject in relation
to cancer risk, and listed 45, both broad and
specific (summarized in Table 2). Respondents also mentioned several occupations
in conjunction with specific exposures or
cancers: landscapers, agricultural workers,
and farmers in relation to pesticide exposure; miners in relation to either silica or
uranium (radiation) and lung cancer; and
health care workers in association with
shift work. When stratified by occupational
role, most groups agreed on several occupations of interest including miners, health
care workers and firefighters.
Numbera,
n
Commonly listed exposuresb
25
20
14
10
9
5
4
3
2
2
1
1
Mining, construction worker, painter
Health care worker, carer
Welder, nuclear technician
Firefighter
Farmer, agricultural worker
Mechanic
Landscaper
—
—
Restaurant worker
—
—
Breast
Respiratory
Hematopoietic
17
14
10
Genital
Digestive
Brain
Skin
Mesothelioma
Urinary
Childhood
Other
9
5
4
3
2
2
2
2
—
Lung, laryngeal, lung adenocarcinoma, nasal
NHL, lymphoma, AML, cutaneous lymphoma,
leukemia, multiple myeloma
Prostate, ovarian, testicular
Colon, esophageal, liver, pancreatic
—
—
—
Bladder
Childhood cancers, neuroblastoma
Sarcoma, thyroid
Cancer site
a
b
Sub-types
Number of respondents that identified each exposure, occupation or cancer group.
Listed by two or more respondents.
Cancers. A small portion of respondents
identified specific cancers as priorities for
occupational research, mentioning 27 at
varying levels of specificity (Table 2). Breast
cancer, identified by respondents from all
occupational roles, was the most commonly
listed. Otherwise, groups differed in the
cancers they prioritized. Interested citizens
149
identified several specific cancers not mentioned by other groups including cutaneous
lymphoma, multiple myeloma and lung
adenocarcinoma. Researchers and health and
safety specialists were the only groups to
mention mesothelioma, a cancer highly
attributable to workplace asbestos exposure. Lung cancer was commonly listed
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
in association with radon exposure and
breast and prostate cancer were commonly
listed in relationship to shift work, particularly among health care workers.
Other priority research issues. Many respondents (32%) felt that the OCRC should
develop specific resources for researchers
and other stakeholders, including exposure
databases, disease registries and geographic
information system (GIS) maps. Others recommended focusing on prevention efforts
(28%) or using specific methodologies or
study designs (25%) including long-term
cohorts, mixed-method studies and biomonitoring. Several respondents (12%) commented
on the need to evaluate interaction between
two or more exposures, exposures and genes,
or exposures and lifestyle factors such as
diet, smoking and viral infections. All groups
listed developing or improving prevention
efforts among their highest priority issues,
and all groups except health care practitioners identified specific research products
that should be a priority.
Barriers to conducting occupational
cancer research in Ontario
Stakeholders gave their opinions on some
common barriers to conducting occupational
cancer research in Ontario and suggested
potential solutions to overcome these. All
groups and stakeholders identified insufficient funding as the central barrier to
conducting occupational cancer research.
Another recurrent theme was a lack of data
on exposures and outcomes, along with the
difficulties associated with using the results
from occupational cancer research in the
workplace to reduce risk. Other cited barriers
included a lack of awareness about occupational cancer issues, employer/industry
resistance, difficulties disentangling exposure relationships, low public and political
priority, lack of collaboration and small
study populations.
The most commonly cited solution to these
barriers was to have different groups from
various geographic regions and disciplines
collaborate—researchers with employers
and workers, researchers with policy makers
and labour unions, and stakeholders with
researchers. Other popular solutions included
increasing awareness of occupational carci-
nogens, expanding training and education,
and strengthening policies and regulations.
Researchers and health care practitioners
identified collaboration with different groups
as the central solution, while health and
safety specialists and interested citizens listed
awareness and education as most important.
Government prioritization topped the list for
workers, a solution that was not commonly
cited by any other group.
Discussion
The OCRC stakeholder consultation produced a long list of exposures, occupations,
cancers and other issues that the community considered a priority for occupational
cancer research. The top priorities identified by respondents, namely chemicals and
respirable dusts and fibres, are not unexpected as these are encountered in many
workplaces. Other identified priorities
included a mix of well-established carcinogens (asbestos and radiation), suspected
but not proven carcinogens (pesticides and
some solvents), current factors of interest
(shift work) and emerging exposures whose
effects are still largely unknown (nanomaterials).
Many of the exposure priorities identified by
OCRC stakeholders echo the research priorities determined by the United States National
Occupational Research Agenda (NORA),
including the need to better characterize suspected carcinogens (e.g. chemicals), identify
emergent carcinogens (e.g. nanomaterials)
and continue surveillance of known occupational carcinogens (e.g. asbestos).3 In addition, CAREX Canada identified many of the
specific exposures listed by OCRC stakeholders as among the most prevalent in Ontario,
including shift work (745 000 to 1 051 000
workers are exposed, depending on how it is
defined), diesel exhaust (275 000 exposed),
benzene (112 000 exposed) and asbestos
(52 000 exposed).13
When we stratified priorities by occupational role, respondents who identified themselves as workers or interested citizens
tended to list well-established carcinogens,
while researchers, industrial hygienists and
health and safety specialists listed these as
well as emergent topics. These differences
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
150
may represent differences in access to information, but may also be due to the size of
the sample or unequal participation across
groups.
Occupations most commonly listed as priorities for cancer research were a combination of jobs with well-established links with
cancer, such as those in construction and
extraction, as well as occupations in industries that have been more recently identified as of risk, such as health care work.
Within the construction and extraction
category, respondents listed occupations
such as mining, construction and painting, some of which the IARC has classified
as Group 1 (carcinogenic to humans).12
Health care, which has not traditionally
been considered a high-risk sector for
cancer, was ranked as the second highest
priority for occupational cancer research.
This priority ranking is particularly interesting in light of the increased attention to
shift work and exposure to antineoplastic
pharmaceuticals within the health care
industry, both of which were specifically
identified as a concern by respondents.
Other occupations listed included a variety
of industries such as production (welders
and nuclear workers), farming, fishing,
forestry, protective services (firefighters)
and food preparation.
The most frequently listed cancers, i.e. breast
and respiratory cancers, are also the ones
that occur most commonly in the general
population. Lung cancer has been strongly
linked with many occupational exposures;
however, the relationship between many
workplace exposures and breast cancer is
not well studied.1 Nevertheless, there is a
growing concern regarding shift work and
breast cancer.14 A number of prominent
researchers increasingly recognize that
occupational cancer in women should be
explored in greater depth.15
Other issues identified by respondents as
priorities for occupational cancer research
point toward an interest in ensuring that
research findings are used to improve
workplace conditions. The need to encourage and facilitate additional research in
this field through the creation of databases
and registries is also apparent. Barriers and
solutions identified by respondents emphasize the need to collaborate, build awareness and use innovative methodologies
to deal with small populations and low
exposures.
2.
The results of this consultation will be highly
useful to the OCRC as it develops its research
agenda, particularly given the Centre’s large
community of funders, partners and stakeholders. Results have already been put to
use to determine priority exposures
and occupations for project development and event planning. For example, in April 2010, the Centre partnered
with the Institute for Work and Health
to present Health Effects of Shift
Work, a symposium of international experts
that discussed the scientific evidence for the
impact of night work/rotating shift work on
human health.
3. Ward EM, Schulte PA, Bayard S, et al;
National Occupational Research Agenda
Team. Priorities for development of
research methods in occupational cancer.
Environ Health Perspect. 2003;111(1):1-12.
The results of this consultation also draw
attention to the challenge of developing a
research agenda in a field where the demand
for information is great, but where there is
variable commonality of interest across various stakeholder groups. They underscore the
need for an increase in occupational cancer
research in Ontario, as well as nationally and
internationally; the need to evaluate cancer
risks from the large number of suspected
occupational carcinogens in the workplace
that are of concern to workers and the
occupational health community; and the
need to move from research to action with
greater speed.
Acknowledgements
The authors would like to thank the OCRC
Steering Committee and Scientific Advisory
Committee for their guidance and support.
Thank you to those involved in the
distribution of the survey, to Sandrene
ChinCheong for compiling the initial stakeholder database and to Yen Borrego for
administrative support.
References
1. Siemiatycki J, Richardson L, Straif K,
Latreille B, Lakhani R, Campbell S, et al.
Listing occupational carcinogens. Environ
Health Perspect. 2004;112(15):1447-59.
CAREX Canada [Internet]. Carcinogen database. Vancouver (BC): University of British
Columbia. [cited 2011 Jan 9]. http://www
.carexcanada.ca/en/carcinogen_profiles_
and_estimates/
4. Blair A, Marrett L, Beane Freeman L.
Occupational cancer in developed countries.
Environ Health. 2011;10 Suppl 1:S9.
5. Vineis P, Cantor K, Gonzales C, Lynge E,
Vallyathan V. Occupational cancer in developed and developing countries. Int J Cancer.
1995;62:655-60.
6. Siemiatycki J. Future etiologic research in
occupational cancer. Environ Health Perspect.
1995;103(S8):209-15.
7.
Choi BC, Eijkemans GJ, Tennassee LM.
Prioritization of occupational sentinel health
events for workplace health and hazard surveillance: the Pan American health organization experience. J Occup Environ Med. 2001;
43(2)147-57.
8.
Harrington JM. Research priorities in occupational medicine: a survey of UK medical
opinion by the Delphi technique. Occup
Environ Med. 1994;51:289-94.
12.IARC. Agents classified by the IARC
monographs
Volumes
1-100.
Lyon:
International Agency for Research on Cancer
[Internet]. Lyon (FR): IARC; [updated 2010
Oct 22; accessed 2010 Jun 2]. Available
from:
http://monographs.iarc.fr/ENG
/Classification/ClassificationsAlphaOrder.
pdf [Accessed 2 June 2010].
13. Peters C. Occupational exposure to selected
priority carcinogens in Ontario. Vancouver
(BC): CAREX Canada; June 2010.
14. Straif K, Baan R, Grosse Y, Secretan B, El
Ghissassi F, Bouvard V, et al. Carcinogenicity of shift-work, painting, and fire-fighting.
Lancet Oncol. 2007;8:1065-6.
15. Zahm SH, Blair A. Occupational cancer
among women: where have we been and
where are we going? Am J Ind Med. 2003;
44:565-75.
9.National
Institute
for
Occupational
Safety and Health. National Occupational
Research Agenda. Atlanta (GA): DHHS
(NIOSH); 1996. Publ. No.: 96-115. Available
from: http://www. cdc.gov/niosh/docs/96
-115/default.html
10. Iavicoli S, Marinaccio A, Vonesch N, Ursini
CL, Grandi C, Palmi S. Research priorities in
occupational health in Italy. Occup Environ
Med. 2001;58:325-9.
11. U.S. Bureau of Labor Statistics. Division of
Occupational Employment Statistics: Standard
Occupational
Classification
[Internet].
Washington (DC): United States Department
of Labor; 2000 [cited 2010 Jun 2].
Available from: http://www.bls.gov/soc/2000
/soc_majo.htm
151
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
A review of screening mammography participation
and utilization in Canada
G. P. Doyle, MBA (1); D. Major, PhD (2); C. Chu, MSc (3); A. Stankiewicz, MPH (4); M. L. Harrison, MSc (5);
L. Pogany, MSc (4); V. M. Mai, MD (6); J. Onysko, MA (4)
This article has been peer reviewed.
Abstract
Introduction: Participation rate is an important indicator for a screening program’s effectiveness; however, the current approach to measuring participation rate in Canada is not
comparable with other countries. The objective of this study is to review the measurement
of screening mammography participation in Canada, make international comparisons, and
propose alternative methods.
Methods: Canadian breast cancer screening program data for women aged 50 to 69 years
screened between 2004 and 2006 were extracted from the Canadian Breast Cancer Screening
Database (CBCSD). The fee-for-services (FSS) mammography data (opportunistic screening
mammography) were obtained from the provincial ministries of health. Both screening
mammography program participation and utilization were examined over 24 and 30 months.
Results: Canada’s screening participation rate increases from 39.4% for a 24-month cut-off
to 43.6% for a 30-month cut-off. The 24-month mammography utilization rate is 63.1% in
Canada, and the 30-month utilization rate is 70.4%.
Conclusion: Due to the differences in health service delivery among Canadian provinces,
both programmatic participation and overall utilization of mammography at 24 months and
30 months should be monitored.
Keywords: breast, mammography, early detection of cancer, breast cancer, cancer,
Keywords: program participation, program utilization, screening
Introduction
Breast cancer is the second leading cause of
death by cancer among Canadian women.1
About 23 200 women were projected to be
diagnosed with breast cancer in 2010, and
5300 women to die from the disease.1 Screening for breast cancer is widely viewed as a
beneficial health intervention, especially for
women aged 50 to 69 years. Randomized controlled trials and meta-analyses suggest that
programmatic screening reduces mortality by
between 25% and 30%;2-6 however, routine
reporting has proven difficult. Reducing mortality in the population eligible for screening
is directly related to the rate of participation.7
As a result, using participation as an interim
measure provides a more practical opportunity for routine reporting by programs.
No standardized measure exists for participation in screening mammography. Defining
screening participation rates outside of trial
settings is complicated by the types of mammography service delivery, which can be both
organized breast cancer screening programs
and other healthcare facilities. Organized
breast cancer screening programs identify
and invite eligible women and provide a
screening examination (typically a bilateral
2-view screening mammogram on a biennial
basis), follow-up of any abnormality, and
recall after a normal or benign examination.
How participation is calculated nationally
and internationally varies substantially, as
do recommended screening intervals and
retention. This further complicates routine
reporting. Despite this, most programs consistently report on program participation;
they have adopted a target of 70% participation based on assumed mortality reduction.8
Because of the wide variation in reporting
on participation in screening mammography
and the interest in determining the most
appropriate method of such reporting, the
Canadian Partnership Against Cancer formed
a working group to (1) review the rationale
for the 70% participation rate target for women aged 50 to 69 years and (2) propose
alternative methods for calculating routine
(biennial) mammography utilization that
would more comprehensively reflect the way
in which Canadian women receive screening mammography.
Methods
The working group completed a review of
selected literature on participation rates in
breast cancer screening programs to identify
the range of definitions and calculations of
participation used by programs in different
countries. We selected two definitions for the
calculations: programmatic participation, the
Author references
1. Breast Screening Program for Newfoundland and Labrador, St. John’s, Newfoundland and Labrador, Canada
2. Institut national de santé publique du Québec, Québec City, Quebec, Canada
3. BC Cancer Agency, Vancouver, British Columbia, Canada
4. Public Health Agency of Canada, Ottawa, Ontario, Canada
5. Cancer Care Manitoba, Winnipeg, Manitoba, Canada
6. Cancer Care Ontario, Toronto, Ontario, Canada
Correspondence: Gregory P. Doyle, Breast Screening Program for Newfoundland and Labrador, 35 Major’s Path, Suite 102, St. John’s NL A1A 4Z9; Tel.: (709) 777-5064;
Fax: (709) 777-5069; Email: gregory.doyle@easternhealth.ca
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
152
proportion of women aged 50 to 69 years
screened in an organized breast cancer
screening program in a defined period of
time among the total population of women
of that age (obtained from census data); and
overall utilization, the combined proportion
of women aged 50 to 69 years receiving
bilateral mammography (including screening
mammography in organized programs, screening mammography outside of organized
programs, or bilateral diagnostic mammography outside of organized programs in
provinces that do not have non-program
screening mammography billing code) among
the total population of women aged 50 to
69 years (obtained from census data).
The Canadian Breast Cancer Screening Database (CBCSD) provided data on programmatic screening. The details of individual
programs and methods of data collection for
the CBCSD are described in detail elsewhere.9
Provincial ministries of health provided data
for fee-for-services (FSS) claims by physicians
for mammography services (opportunistic
screening mammography). Calculations were
performed for the data years 2004 to 2006,
the most recent available from both the
CBCSD and FFS data sources. Where possible, data from organized screening and FFS
were cross-referenced to eliminate duplication; only a very small number of duplicate
screens were found. The analysis included
data from seven provinces: British Columbia,
Alberta, Saskatchewan, Manitoba, Ontario,
Quebec, and Newfoundland and Labrador.
Statistics Canada’s Canadian Community
Health Survey (CCHS) provided self-report
data on 24-month screening mammography.9
Two screening intervals, 24 and 30 months,
were selected as defined periods for assessing programmatic participation and overall
utilization of breast cancer screening programs. The 24-month interval represents
a strict interpretation of screening interval
recommendations and performance targets,
while the 30-month interval reflects more
realistic adherence to screening interval
recommendations.
Results
International breast cancer screening
programs show considerable differences
in their organization, screening modalities, recruitment methods and target
age groups;10-18 these are likely to affect
comparison of participation (Table 1). In
Canada, organized programs report upon
the participation of women aged 50 to
69 years based on a denominator of firstand second-year populations averaged
from census estimates (Table 2). The
cumulative probability of returning to a
mammography screening program (the
reten-tion rate) in Canada, for example,
shows that only approximately 30% of
the screening population undergo their
screening mammography at the strict
interval of 24 months (Figure 1).
Table 1
Overview of screening programs guidelines and calculation of participation10-18
Country
Canada
Australia
New Zealand
European
United Kingdom
Hungary
Organization
Provincial
National
National
—
National
National
Recruitment method
Volunteer
Volunteer/invitation
Volunteer/invitation
Invitation
Invitation
Invitation
Target age range, years
50–69
50–69
50–69
50–69
50–70
45–65
Participation numerator
Number of women
screened in a 2-year
period
Number of women
screened in a 2-year
period
Number of women
screened in a 2-year
period
Number of invited
women screened
Number of invited
women screened in
a 12-month period
Number of invited
women screened in
a 2-year period
Participation denominator
1st and 2nd year
populations
averaged from
census/forecast
Average of
2-year estimated
population on
June 30
Smoothed
census population
estimates over
2 years
Invited population
Invited population
in a 12-month
period
Invited population
in a 2-year period
Target participation rate
≥ 70%
≥ 70%
≥ 70% of women
aged 45–69 years
Acceptable: > 70%
Desirable: > 75%
Minimum: ≥ 70%
Target: ≥ 80%
Acceptable: > 70%
Desirable: > 75%
Notes: In addition to accepting volunteers, some Canadian provinces also send letters of invitation to the target population. This differs from Australia and New Zealand, where all programs
accept volunteers and send letters of invitation, and from the United Kingdom and Hungary, where only women who receive a letter of invitation are accepted.
Participation in programmatic breast cancer
screening was 39.4% (24-month interval)
and 43.6% (30-month interval) in Canada.
When utilization was calculated by incorporating FFS screening, the estimates rose
to 63.1% and 70.4% respectively (Table 3).
The 30-month utilization estimate is close
to the 70% target set by most countries,
while the 24-month utilization estimate
closely approximates the CCHS self-reported
screening by Canadian women. Increases in
programmatic participation and overall
utilization were accrued by using a 30-month
period; however, these increases varied provincially between 3.3% and 15.7% (Table 3).
Table 2
Breast screening programs in Canada: usual practices in 2004 and 2006
Province
British Columbia
Alberta
Saskatchewan
Manitoba
Ontario
Quebec
Newfoundland and Labrador
Program
start date
Target age
group, years
Availability of
mobile screening
CBE offered
1988
1990
1990
1995
1990
1998
1996
50–69
50–69
50–69
50–69
50–69
50–69
50–69
Yes
Yes
Yes
Yes
Yes
Yes
No
No
No
No
Noa
Yesb
No
Yesc
Abbreviations: CBE, clinical breast examination.
a
b
c
Nurse or technologist provided CBE service until October 2005.
Nurse provides CBE at 52% of sites.
Nurse completes CBE.
153
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
Accurate estimates of participation in
screening mammography are essential to
determine the impact of screening on mortality. Reports on participation indicators
(programmatic screening, utilization and
self-reports) must consider the context, the
limitations in the methodology of calculation and the screening interval (24 versus
30 months), and the practices of the programs being compared.
Figure 1
Cumulative probability of returning for a subsequent breast cancer screen by
age group, among women who participated in screening in the years 2000 and 2001
100
90
80
Retention rate (%)
Discussion
70
60
50
40
30
20
All the methods available in the Canadian
context have limitations. The current practice
of reporting only programmatic screening
excludes a substantial amount of screening
mammography, leading to substantial underestimation of the potential mortality reduction. Estimates of self-reported mammography
10
0
3
6
9
12
15
18
21
24
27
30
33
36
39
42
45
48
51
Months since last program screen
Age group 50-59
Age group 60-69
Table 3
Screening mammography programmatic participation and overall utilization, nationally and by province, 2004-2006
Area
Canada
British Columbiad
Albertad
Saskatchewand
Manitobad,e
Ontariod
Quebecd
Newfoundland an Labradord
Participation
in program at
24 monthsa
%
Participation
in program at
30 monthsb
%
Overall utilization
at 24 monthsa
%
Overall utilization
at 30 monthsb
%
Self-reported
screening
mammography
24 monthsc
% (95% CI)
39.4
51.1
9.1
48.3
52.5
32.4
51.6
35.4
43.6
55.1
10.8
54.8
56.5
36.5
56.7
36.6
63.1
60.0
62.8
60.9
63.7
63.5
64.6
63.9
70.4
65.4
70.9
68.8
69.4
72.5
70.4
68.6
62.5 (60.9–64.1)
60.1 (55.7–64.6)
64.0 (58.4–69.3)
63.7 (58.1–69.2)
56.1 (50.1–62.1)
62.7 (59.8–65.7)
64.3 (61.0–67.6)
61.5 (55.0–68.1)
Abbreviations: CI, confidence interval.
24-month period from January 1, 2005, to December 31, 2006.
30-month period from January 1, 2004, to June 30, 2006.
c
2008 Canadian Community Health Survey9
d
Provincial fee-for-service code definitions available upon request.
e
24-month period from April 1, 2005, to March 31, 2007; 30-month period from April 1, 2004, to September 30, 2006.
a
b
utilization are consistent across jurisdictions;
however, they rely on survey participant
recall, which is thought to result in an overestimation of desirable behaviour.19 Mammography utilization may exaggerate the impact
on mortality because FFS screening does not
include features such as population-based
recruitment, automated recall/reminders for
subsequent screening, coordinated follow-up
of abnormal screening, systematic quality
assurance and routine performance evaluation. In addition, both misclassification of
diagnostic mammograms as screening mammograms and double counting of women
screening in both the FFS and programmatic
sector can artificially elevate the utilization
rate and lead to overestimating the benefit to
mortality. Further, programs varied in their
capacity to eliminate double counting for the
utilization rate, but those that succeeded
found an inconsequential amount of double counting. The 24-month self-reported
and utilization rates are similar (Table 3),
suggesting that both methods may be more
acc rate than previously reported, or at
least similarly biased.
The use of a 30-month screening interval
to account for the “true” screening interval
overestimates rates of biennial screening
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
154
mammography (Figure 1). While screening
outcomes, including the abnormality recall
rate and cancer detection rate, appear to
hardly vary among women who return for
screening by 30 months versus 24 months,9
delaying diagnosis and treatment by as
little as 3 to 6 months may be associated with
worse survival.20 However, the United
Kingdom Breast Screening Frequency Trial,
using indirect indicators of outcome, found
a relatively small effect on breast cancer
mortality when comparing annual screening to a 3-year screening interval.21 Given
the conflicting evidence, it is difficult
to determine if screening programs that
obtain 70% participation over 24 months
will outperform, in terms of their effect on
mortality, those programs that obtain the
same rate of participation over a 30-month
screening interval.
Of note is the low rate of programmatic
screening in Alberta compared to the rest of
Canada (9.1% vs. 39.4%) (Table 3). During
the period under study, 2004 to 2006, the
organized breast cancer screening program
in Alberta included a fixed site clinic in each
of two major cities and a mobile service in
remote areas. Mammography services were
also available through the FFS sector in the
rest of the province. As a result, their mammography utilization rates were comparable
to that of national rates (70.9% vs. 70.4%,
respectively). A province-wide breast cancer screening program was launched in
March 2008.
Ensuring that participation rates are internationally comparable is extremely difficult.
An indicator must have as little bias as possible and accurately reflect practices that
maximize mortality reduction. In addition,
the context of program practices must always
be considered when making comparisons.
While most programs report on women
aged 50 to 69 years, Hungary and United
Kingdom use a wider age range (Table 1).
Most programs rely on biennial recall, but
the United Kingdom uses a 3-yearly approach. Most importantly, calculation of both
the denominator and numerator varies considerably; the Canadian method results in
the most conservative estimates of participation (Table 1).
and overall utilization of mammography at
24 months and 30 months should be monitored and reported. Moreover, reporting on
multiple participation indicators may facilitate the comparison of mammography usage
internationally.
Acknowledgements
Funding for this research was provided by
the Canadian Partnership Against Cancer.
The authors thank Dr. Laura McDougall
from Alberta Health Services for her
helpful discussion and insight.
References
1. Canadian Cancer Society’s Steering Committee. Canadian Cancer Statistics 2010.
Canadian Cancer Society. Toronto (ON):
Canadian Cancer Society; 2010.
2. Andersson I, Aspegren K, Janzon L,
Landberg T, Lindholm K, Linell F, et al. Mammographic screening and mortality from
breast cancer: the Malmo mammographic
screening trial. BMJ. 1988;297:943-8.
3. Alexander FE, Anderson TJ, Brown HK,
Forrest AP, Hepburn W, Kirkpatrick AE, et al.
14 years of follow-up from the Edinburgh
randomised trial of breast-cancer screening.
Lancet. 1999;353;1903-08
4.
Conclusion
Duffy SW, Tabar L, Vitak B, Yen MF, Warwick
J, Smith RA, et al. The Swedish Two-County
Trial of mammographic screening: cluster
randomisation and end point evaluation.
Ann Oncol. 2003;14(8):1196-8.
In general, measures of overall program utilization in Canada suggest that breast cancer screening is occurring at close-to-target
levels, but the impact on mortality of overall
utilization cannot be assumed to be equivalent to that of programmatic screening. This
is due to insufficient information concerning
the quality of FFS mammography screening.
5.
Due to the differences in provincial health
care structures and service delivery, and the
significant amount of opportunistic mammography that takes place in Canada, we conclude that both programmatic participation
7. Day NE, Williams DR, Khaw KT. Breast
cancer screening programmes: the development of a monitoring and evaluation system.
Br J Cancer. 1989;59(6):954-8.
6.
Shapiro S, Strax P, Venet L. Periodic breast
cancer screening in reducing mortality from
breast cancer. JAMA. 1971;215:1777-85.
International Agency for Research on Cancer
Screening. IARC Handbooks of Cancer
Prevention, Vol.7, Breast Cancer Screening.
Lyon (FR): IARC Press; 2002.
155
8. Forrest AP. Breast cancer: the decision to
screen. 4th H.M. Queen Elizabeth The Queen
Mother Fellowship; 1990. London (UK):
Nuffield Provincial Hospitals Trust; 1990.
9.
Public Health Agency of Canada. Organized
breast cancer screening programs in Canada:
report on program performance in 2005 and
2006. Ottawa (ON): Health Canada. Forthcoming 2011.
10. Evaluation Indicators Monitoring Group.
Guidelines for monitoring breast screening
program performance, 2nd ed. Ottawa (ON):
Public Health Agency of Canada; 2007 Mar.
11.BreastScreen Australia Data Dictionary
Version 1 [Internet]. [place unknown]:
National Quality Management Committee;
2004 [cited 2009 Mar 7]. Available
at:
http://www.cancerscreening.gov.au
/internet/screening/publishing.nsf/Content
/br-dictionary/$File/bsa-dd.pdf
12. BreastScreen Aotearoa Data Management
Manual Version 4.0 [Internet]. [place
unknown]: National Screening Unit BreastScreen Aotearoa; 2010 Mar Available at:
http://www.nsu.govt.nz/files/BSA/Data
_management_manual.pdf
13. Consolidated guidance on standards for the
NHS Breast Screening Programme. NHSBSP
Publication No 60 version 2. London (UK):
NHS Cancer Screening Programmes; 2005
Apr.
14. Boncz I, Sebestyen A, Dobrossy L, Pentek Z,
Budai A, Kovacs A, et al. The organisation
and results of first screening round of the
Hungarian nationwide organized cancer
screening programme. Ann Oncol. 2007;18:
795-9.
15. National Quality Management Committee
of BreastScreen Australia. BreastScreen
Australia National Accreditation Standards,
Quality Improvement Program. BreastScreen
Australia; Jul 2001, revised 2008 Apr.
16. Breastscreen Aotearoa [Internet]. New Zealand
National Health Board; 2009 [cited 2009
Mar 7]. Available from: http://www.nsu
.govt.nz/Current-NSU-Programmes/559.asp
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17. Taylor R, Arnett K, Begg S. BreastScreen
Aotearoa Independent Monitoring Report,
January-June, 2007 [Internet]. Queensland
(AU): School of Population Health, University of Queensland; 2007 [cited 2009 Mar 7].
Available from: http://www.nsu.govt.nz
/Health-Professionals/1048.asp
18. Perry N, Broeders M, De Wolf C, Tornberg
S, Holland R, Von Karsa L, Puthaar E, editors.
European guidelines for quality assurance
in breast cancer screening and diagnosis,
4th ed. Health & Consumer Protection
Directorate-General, European Communities:
Brussels (LU); 2006.
19. Bancej CM, Maxwell CJ, Snider J. Inconsistent self-reported mammography history:
findings from the National Population Health
Survey longitudinal cohort. BMC Health Serv
Res. 2004;4:32.
20. Richards MA, Westcombe AM, Love SB,
Littlejohns P, Ramirez AJ. Influence of delay
on survival in patients with breast cancer:
a systematic review. Lancet. 1999;353(9159):
1119-26.
21. Breast Screening Frequency Trial Group.
The frequency of breast cancer screening:
results from the UKCCCR Randomised Trial.
United Kingdom Co-ordinating Committee
on Cancer Research. Eur J Cancer. 2002;
38:1458-64.
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
156
The prevalence of chronic pain and pain-related interference
in the Canadian population from 1994 to 2008
M. L. Reitsma, MSc (1); J. E. Tranmer, PhD (1); D. M. Buchanan, PhD (1); E. G. Vandenkerkhof, DrPH (1,2)
This article has been peer reviewed.
Abstract
Introduction: Estimates of the prevalence of chronic pain worldwide and in Canada are
inconsistent. Our primary objectives were to determine the prevalence of chronic pain
by sex and age and to determine the prevalence of pain-related interference for Canadian
men and women between 1994 and 2008.
Methods: Using data from seven cross-sectional cycles in the National Population Health
Survey and the Canadian Community Health Survey, we defined two categorical outcomes, chronic pain and pain-related interference with activities.
Results: Prevalence of chronic pain ranged from 15.1% in 1996/97 to 18.9% in 1994/95.
Chronic pain was most prevalent among women (range: 16.5% to 21.5%), and in the
oldest (65 years plus) age group (range: 23.9% to 31.3%). Women aged 65 years plus
consistently reported the highest prevalence of chronic pain (range: 26.0% to 34.2%).
The majority of adult Canadians who reported chronic pain also reported at least a few
activities prevented due to this pain (range: 11.4% to 13.3% of the overall population).
Conclusion: Similar to international estimates, this Canadian population-based study
confirms that chronic pain persists and impacts daily activities. Further study with more
detailed definitions of pain and pain-related interference is warranted.
Keywords:chronic pain, prevalence, sociodemographic factors, general population,
activity prevention
Introduction
Approximately 17% of Canadians—3.9 million individuals aged 15 years plus—reported
having chronic pain or some discomfort.1
Chronic pain interferes with quality of life,
including the social and family aspects,
and with the ability to work.2 In 2010, the
Chronic Pain Association of Canada reported
that “the annual cost of chronic pain, including medical expenses, lost income, and lost
productivity, but not the social costs, is
estimated to exceed $10 billion.”3
The prevalence of non-specific chronic pain
in the general population is reported to be as
high as 55%.4,5 Canadian studies have also
reported a broad range of estimates of prevalence of chronic pain, from 11% to 44%.1,2,6-13
These studies used time frames ranging
from 3 to 6 months2,6,7,12 or defined pain as
usual pain/often troubled with pain;1,8-11,13
however, pain definitions with a broader
time frame (i.e. usual or persistent pain)
reported lower prevalence estimates.1,8-11,13
Moreover, of all the Canadian reports only
five were large population-based studies1,9-11,13 and three of these reported on
older data from the National Population
Health Survey (NPHS) 1996/97 cycle.9,11,13
Both Canadian and international prevalence estimates of chronic pain varied by
age and sex, with a higher prevalence in
females2,5,6-10,12,14-18 and in the older age
group.2,5,8-11,14,15,17-20 Not all of the Canadian
studies that examined the prevalence of
chronic pain within gender and age categories are representative of the general population; one study included a participant
sample representative of seven counties in
southeastern Ontario12 and another of a city
near Toronto.8 Nevertheless, the available
evidence from cross-sectional populationbased studies that used older data (from
1996/97) and from smaller studies suggests
that in Canada, women and older individuals report chronic pain more often.
Although previous studies found that pain
interferes with daily activities,1,2,7,8,10,12,13 no
studies have addressed the interference of
chronic pain in Canadians over time.
The purpose of our study was to examine
the overall prevalence of chronic pain and
pain-related interference in Canadians over
time, regardless of the factors associated with
it. The specific research objectives were to
(1) examine the prevalence of chronic pain
in the Canadian population from 1994 to
2008; (2) describe the sex and age differences in prevalence of chronic pain; and (3)
describe the sex differences in pain-related
interference with activities of daily living.
Methods
Questionnaire and data collection
Our study used data from seven cross-sectional cycles from the Household component of the NPHS (1994/95, 1996/97 and
1998/99) and the Canadian Community
Health Survey (CCHS) (2000/01, 2003, 2005
and 2007/08) to document chronic pain in
Canada over time. These surveys collect
information on participants’ health status,
determinants of health and use of health
Author references
1. School of Nursing, Queen’s University, Kingston, Ontario, Canada
2. Department of Anesthesiology, Queen’s University, Kingston, Ontario, Canada
Correspondence: Elizabeth VanDenKerkhof, Department of Anesthesiology & Perioperative Medicine, Queen’s University, 76 Stuart St., Kingston ON K7L 2V7; Tel.: (613) 549-6666 ext. 3964;
Fax: (613) 548-1375; Email: ev5@queensu.ca
157
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
and medical services through structured interviews held in person and by telephone.21,22
The NPHS began in 1994 as both a cross-sectional and longitudinal survey; in 2000/01,
the cross-sectional component of the NPHS
became part of the CCHS, still conducted
by Statistics Canada.21 Both the NPHS and
CCHS took place biennially until 2007,
when the CCHS became an annual survey,
but the combined data for the two years
(2007/08) were also released.23 Both surveys
were developed by specialists at Health
Canada, Statistics Canada and provincial
health ministries as well as academic researchers in relevant fields; advisory and expert
committees approved the questionnaires.
Further information on the sample design of
the NPHS and CCHS is available elsewhere.21,22
Population and sample
We included NPHS participants aged 25
years plus and CCHS participants aged 20
years plus. The difference in the age groups
is due to the different age categories used
in the variation tables provided by Statistics
Canada (12–24, 25–44, 45–64 and 65+
years for NPHS; 12–19, 20–29, 30–44, 45–64,
and 65+ years for CCHS). Although some of
the previous studies included participants as
young as 15 years old,11,14,15,19 we limited age
to 20 years and over to avoid combining and
comparing adolescents and adults. Two prospective studies24,25 and one study that used
the NPHS data13 also used data for those
aged 25 years plus at baseline; hence we can
compare our results with published results.
In the 1994/95, 1996/97 and 1998/99 NPHS,
the household sample was selected from
the 10 provinces and included 17 626 participants, 81 804 participants and 17 244 participants respectively.26-28 The participants
were selected using two different sampling
techniques including clusters and dwellings.21 In the 2000/01, 2003, 2005 and
2007/08 CCHS, 65 000 participants from
121 health regions from all the provinces
and territories were required each year.22
The sample sizes were 130 827 participants
in 2000/01, 134 072 in 2003, 132 947 in
2005 and 131 061 in 2007/08.23,29-31 The most
recent census was used to guide the sample population and account for recent
deaths, births and estimated migration;
if needed, changes were made to the surveyed health regions based on the latest
census.23,26-31 Moreover, when results are
weighted correctly, the NPHS and CCHS
are representative of the covered population
including the provinces and territories from
which they were sampled.23,26-31 Both the
NPHS and CCHS household cross-sectional
components excluded residents of institutions, reserves and some remote areas and
full-time members of the Canadian forces.21,22
Response rates for all of the cycles used in
this study were greater than 77.6%.
Variables
Outcome variable:
pain and pain interference
We defined chronic pain using the following question: “Are you usually free of pain
or discomfort?”26-30,32,33 Participants who responded “no” were considered to have chronic
pain. These individuals were then asked how
many activities their pain or discomfort
prevented, choosing from “none,” “a few,”
“some” or “most.”26-30,32,33 This definition,
used in several studies, is thought to be a
valid measure of the prevalence of chronic
pain in the general population.9,13
Independent variables: age and sex
We examined the presence of “usual pain”
by sex and by age and the number of activities prevented due to this pain by sex.
Participants were grouped into age categories depending on the variation tables provided by Statistics Canada (25–44, 45–64,
65+ years for NPHS; 20–44 [20–29 and
30–44], 45–64, 65+ years for CCHS).
Data analysis
We analyzed the data for each NPHS
and CCHS cycle separately using SPSS
version 16.0 (IBM). For each statistical test, the sample was weighted to
the Canadian population using the
appropriate weighting variable for each
cycle.23,26‑31 The Canadian population was
described by sex for each cycle using numbers and percentages. Significant differences
in the prevalence estimates and measures
of prevented activities between groups were
identified using 95% confidence intervals
(CIs). Sampling weights were applied to all
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
158
estimates to allow for generalization to the
Canadian population. Only groups that
included at least 30 sampled participants
were reported as indicated in the release
guidelines set out by Statistics Canada.26,29
We compared all numbers reported to the
Statistics Canada Sampling Variability Tables
to determine if the cell frequency for a
given variable was large enough to avoid an
individual being identified: if the coefficient
of variation was between 0.0 and 16.5, it
was acceptable to release; if 16.6 to 33.3,
it was considered marginal and numbers
were allowed to be released with a caution
(in the NPHS, coefficient of variations between 25.1 and 33.3 could only be released
with the exact variance); and if greater than
33.3, it could not be released.26,29 Confidence intervals were obtained using the
Sampling Variability Tables. For the CCHS
2003, estimates were obtained using a subsample macro file in the Research Data
Centre at Queen’s University and we performed bootstrapping and obtained confidence intervals in STATA: Data Analysis and
Statistical Software version 11.0 (StataCorp
LP). Bootstrap-ping allows robust standard
error estimates and confidence intervals
for a variety of estimates, including means
and proportions.34 We replicated five hundred samples for each analysis to ensure
results were not significant due to large
sample sizes.
The Queen’s University Health Sciences and
Affiliated Teaching Hospitals Research Ethics
Board reviewed and approved this analysis.
Results
Population
The ratio of men to women was similar
across years and between provinces, with a
higher ratio of women to men; the reverse
was seen in the Yukon, Northwest Territories
and Nunavut. The Canadian population to
which these results are generalizable (i.e.
non-military, non-institutionalized, etc.)
increased from 18 836 000 individuals in
1994/95 to 24 639 000 in 2007/08.
Chronic pain
In the first cycle (1994/95), 18.9% (95%
CI: 18.1–19.7) of the Canadian population
reported chronic pain; in the next cycle
(1996/97), this percentage dropped to 15.1%
(95% CI: 14.5–15.7). Since then, this percentage has increased overall to a high of
18.5% (95% CI: 18.0–19.0) in 2007/08.
Generally, the prevalence reported in consecutive cycles was not significantly different
from one to the next. However, the 1996/97
cycle reported a significantly lower prevalence compared to all others except the
1998/99 cycle. Figure 1 shows the prevalence of chronic pain between 1994/95 and
2007/08.
Women reported higher pain estimates in
every surveyed cycle compared to men. The
prevalence of chronic pain in women
ranged from 16.5% (95% CI: 15.6–17.4) in
1996/97 to 21.5% (95% CI: 20.2–22.8) in
1994/95 and in men from 13.6% (95% CI:
Figure 1
Crude prevalence of chronic pain in men and women in the Canadian population based on the cross-sectional
data from the National Population Health Survey and Canadian Community Health Survey
20
15
10
NPHS
1994/95
NPHS
1996/97
NPHS
1998/99
CCHS
2000/01
CCHS
2003
CCHS
2005
Women
Men
All
Women
Men
All
Women
Men
All
Women
Men
All
Women
Men
All
Women
Men
All
All
0
Women
5
Men
Percent with chronic pain
(95% confidence interval)
25
CCHS
2007/08
*NPHS included people 25 years and older and CCHS included 20 years and older.
Notes: All participants in the provinces (not the territories) were asked the “usual pain” questions on each NPHS. In 2000/01 and 2007/08, participants in all provinces and Yukon,
Northwest Territories (NWT) and Nunavut answered the pain questions. In 2003, participants in the East coast and Quebec answered the pain questions and in 2005, participants in
British Columbia answered the pain questions; however, these results were then weighted to the rest of the population.
Figure 2
Crude prevalence of chronic pain in the Canadian population based on the cross-sectional data
from the National Population Health Survey and Canadian Community Health Survey by age
35
30
20
15
10
5
NPHS
1994/95
NPHS
1996/97
NPHS
1998/99
CCHS
2000/01
CCHS
2003
CCHS
2005
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
25-44
65+
45-64
25-44
65+
45-64
0
25-44
Percent with chronic pain
(95% confidence interval)
25
CCHS
2007/08
Notes: All participants in the provinces (not the territories) were asked the “usual pain” questions on each NPHS. In 2000/01 and 2007/08, participants in all provinces and Yukon,
Northwest Territories (NWT) and Nunavut answered the pain questions. In 2003, participants in the East coast and Quebec answered the pain questions and in 2005, participants in
British Columbia answered the pain questions; however, these results were then weighted to the rest of the population.
159
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
Figure 3
Crude prevalence of chronic pain in men in the Canadian population based on the cross-sectional data
from the National Population Health Survey and Canadian Community Health Survey by age
35
Percent with chronic pain
(95% confidence interval)
30
25
20
15
10
5
NPHS
1994/95
NPHS
1996/97
NPHS
1998/99
CCHS
2000/01
CCHS
2003
CCHS
2005
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
25-44
65+
45-64
25-44
65+
45-64
25-44
0
CCHS
2007/08
Notes: All participants in the provinces (not the territories) were asked the “usual pain” questions on each NPHS. In 2000/01 and 2007/08, participants in all provinces and Yukon,
Northwest Territories (NWT) and Nunavut answered the pain questions. In 2003, participants in the East coast and Quebec answered the pain questions and in 2005, participants in
British Columbia answered the pain questions; however, these results were then weighted to the rest of the population.
12.5–14.7) in 2003 to 16.2% (95% CI: 14.8–
17.6) in 1994/95. In general, there were no
significant differences in pain prevalence by
sex over time; however, there were significant differences between sexes (Figure 1).
The prevalence of pain was significantly
different between age groups (Figure 2).
The oldest age group (65+ years) reported
the highest prevalence of chronic pain
(range: 23.9% to 31.3%); there was no significant trend over time. Generally, there was
a significant difference in the prevalence
of chronic pain reported between the age
groups in both men and women (Figures 3
and 4); further, women in the two oldest age
groups (45–64 and 65+ years) reported significantly higher prevalence estimates than
did men in these age groups. Women aged
65 years plus consistently reported the
highest prevalence of chronic pain, ranging
from 26.0% (95% CI: 24.4–27.6) in 1996/97
to 34.2% (95% CI: 31.9–36.5) in 1994/95.
Level of activities prevented chronic pain
The majority of the population with chronic
pain reported interference with activities:
11.4% of the entire population in 1996/97
(95% CI: 10.8–12.0) to 13.3% of the entire
population in 2000/01 (95% CI: 13.0–13.6)
and 2007/08 (95% CI: 12.8–13.8) reported
at least a few prevented activities (Figure 5).
Overall, compared to men at each surveyed
year, women reported more interference
and significantly more pain that prevented a
few activities and some activities (Figure 6).
Generally, there was no difference between
women and men reporting pain that prevented no activities and most activities.
Also, there was no statistically significant
difference between consecutive years; further, the patterns are similar between prevalence of chronic pain and pain interference
over the years.
Missing data for the chronic pain variables
in each cycle ranged from 0.1% to 0.5%.
Discussion
This is the first study to examine the prevalence and interference of chronic pain over
a 14-year period (1994–2008) in Canadian
adults.
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
160
With the exception of a significant decrease
in chronic pain from the first cycle (1994/95)
to the second cycle (1996/97) (Figure 1),
the prevalence of chronic pain gradually
increased over time. The overall temporal
trend was not significant; however, there
was a significant difference between the
cycle years 1996/97 and 2007/08, indicating
real increases in chronic pain over time.
Our study reported prevalence estimates
(15.1% to 18.9%) that were within earlier
Canadian estimates (11% to 44%).2,6-13 The
differences could be attributed to differences
in sampling methodology, sample sizes and
definitions of chronic pain. Population level
studies with large sample sizes (10 000 participants or more) such as ours were more
likely to report smaller prevalence estimates
(11% to ~21%) than were studies with
fewer participants.1,9-11,13-15,35,36
Studies using the same or similar definitions
as the NPHS and CCHS reported prevalence
estimates (11% to 17%) comparable to our
findings.1,8-11,13 Three of these used the
1996/97 NPHS cycle,9,11,13 with one reporting
Figure 4
Crude prevalence of chronic pain in women in the Canadian population based on the cross-sectional data
from the National Population Health Survey and Canadian Community Health Survey by age
40
35
Percent with chronic pain
(95% confidence interval)
30
25
20
15
10
5
NPHS
1994/95
NPHS
1996/97
NPHS
1998/99
CCHS
2000/01
CCHS
2003
CCHS
2005
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
20-44
65+
45-64
25-44
65+
45-64
25-44
65+
45-64
25-44
0
CCHS
2007/08
Notes: All participants in the provinces (not the territories) were asked the “usual pain” questions on each NPHS. In 2000/01 and 2007/08, participants in all provinces and Yukon,
Northwest Territories (NWT) and Nunavut answered the pain questions. In 2003, participants in the East coast and Quebec answered the pain questions and in 2005, participants in
British Columbia answered the pain questions; however, these results were then weighted to the rest of the population.
only chronic non-cancer pain11 and another
reporting all chronic pain;13 nevertheless,
prevalence estimates remained similar.
Studies that used a concrete timeframe to
define chronic pain (e.g. 3 or 6 months) were
more likely to report higher estimates of
chronic pain than we found when using a
more general timeframe (i.e. usual pain).2,6,7,12
However, small sample sizes may also have
affected the reported prevalence estimates.2,6,7,12 Further, it was not clear that all
reports of estimates of chronic pain were
based on a validated measure.19,25,37 Results
from studies not using a validated definition should be interpreted with caution.
The majority of those reporting chronic pain
also reported interference in daily activities
as a result of this pain; moreover, the level
of interference in activities due to chronic
pain (range: 11.4% to 13.3%) is consistent
with an Australian study also reporting
inter-ference in daily activities (women:
13.5%; men: 11.0%).14
We found that women were more likely to
report chronic pain than were men and that
chronic pain generally increased with age.
These findings were consistent across survey
cycles and are supported by the literature.2,5,6-8,
11,12,14-18,20,37
We also found that chronic pain
was most prevalent in the women’s oldest
age group (65+ years) and that most
participants reporting chronic pain also
reported interference with activities due to
pain, with women reporting more interference than did men.
One limitation of our study is that we did
not control for diseases known to be associated with chronic pain, such as arthritis,
and therefore we could not distinguish between condition-related pain and chronic
pain of unknown origin. This may partially
explain the higher reported prevalence of
chronic pain in older women who are known
to report more chronic pain conditions than
do men (e.g. due to fibromyalgia, arthritis/
rheumatism, back problems, and migraine
161
headaches).38 Differences in prevalence
estimates worldwide may be true differences,
or they may be due to a number of factors,
including lifestyle, age distribution, and pain
perception and treatment.36 A longitudinal
study is necessary to elucidate factors that
increase the risk of chronic pain.
Second, although the NPHS and CCHS
household cross-sectional components are
representative of most of Canada, they both
exclude residents of institutions.21,22 As a
result, the prevalence of chronic pain in the
Canadian population may be underreported
as nursing homes and other long-term care
facilities most likely have many individuals
suffering from chronic pain.39 Third, the pain
question does not specify a time frame for
“usual pain.” Individuals with other conditions may also be reporting chronic pain.
However, our findings are similar to the
results reported in a cross-sectional study
using 1996/97 NPHS data that controlled
for medical and health factors.11 Moreover,
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
Figure 5
Crude prevalence of chronic pain with the level of activity prevented using cross-sectional data
from the National Population Health Survey and Canadian Community Health Survey
20
Percent with Chronic Pain
18
16
14
12
10
8
6
4
2
0
NPHS
1994/95
NPHS
1996/97
NPHS
1998/99
CCHS
2000/01
CCHS
2003
CCHS
2005
CCHS
2007/08
Year
Pain with no activities prevented
Pain with some activities prevented
Pain with a few activities prevented
Pain with most activities prevented
* NPHS included people 25 years and older and CCHS included 20 years and older
Notes: All participants in the provinces (not the territories) were asked the “usual pain” questions on each NPHS. In 2000/01 and 2007/08, participants in all provinces and Yukon,
Northwest Territories (NWT) and Nunavut answered the pain questions. In 2003, participants in the East coast and Quebec answered the pain questions and in 2005, participants
in British Columbia answered the pain questions; however, these results were then weighted to the rest of the population.
Figure 6
Crude prevalence of chronic pain in men and women with the level of activity prevented using cross-sectional data
from the National Population Health Survey and Canadian Community Health Survey
Percent with Chronic Pain
25
20
15
10
5
NPHS
1994/95
NPHS
1996/97
CCHS
2000/01
CCHS
2003
CCHS
2005
Men
Women
Men
Women
Men
Women
Men
NPHS
1998/99
Women
Men
Women
Men
Women
Men
Women
0
CCHS
2007/08
Year
Pain with no activities prevented
Pain with some activities prevented
Pain with a few activities prevented
Pain with most activities prevented
* NPHS included people 25 years and older and CCHS included 20 years and older
Notes: All participants in the provinces (not the territories) were asked the “usual pain” questions on each NPHS. In 2000/01 and 2007/08, participants in all provinces and Yukon,
Northwest Territories (NWT) and Nunavut answered the pain questions. In 2003, participants in the East coast and Quebec answered the pain questions and in 2005, participants
in British Columbia answered the pain questions; however, these results were then weighted to the rest of the population.
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
162
previous studies using general pain definitions reported similar prevalence estimates of chronic pain.1,8-11,13 The age groups,
although similar, are not identical between
the NPHS (25 years plus) and CCHS (20
years plus), but results are similar across
cycles. Similar age groups were used in
the literature, so our results could be compared to those of previous studies.13,24,25
Finally, recall bias may be an issue due to
self-reported questionnaires.
There are substantial strengths to this study.
The seven NPHS and CCHS cycles were each
based upon a large random sample with
minimal missing data. This large random
sample supports the generalizability of the
findings to the rest of the population (excluding those few areas mentioned above).
Further, Van Den Kerkhof et al. compared the
Canadian census data to the NPHS 1996/97
data using direct standardization and found
the sample to be representative and generalizable to the overall Canadian population.13 Also, the pain questions are considered to be a valid measure of chronic
pain.9,13,39 Thus these results provide a reliable and accurate estimate of the prevalence
of chronic pain and interference in daily
activities as a result of pain in the Canadian
population.
Conclusion
This study is the first to examine the prevalence of chronic pain over a number of
years in Canada; it demonstrated that chronic
pain is prevalent in the Canadian population
(range: 15.1% to 18.9%), that it is most
prevalent among women (range: 16.5% to
21.5%) and the older population (range:
23.9% to 31.3%), and that many of those
with chronic pain were prevented from taking
part in at least a few activities by this pain
(range: 11.4% to 13.3%). Cross-sectional
studies do not identify the incidence of a
disease or predictors and/or causes of a
disease or illness. Therefore, future research
includes the need for a longitudinal study
to identify the incidence and predictors of
chronic pain in Canadians.
Funding
Funding was provided by the Freda Paltiel
Award for statistics consultation. Funding
was also received through the Queen’s
Graduate Award.
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Can we use medical examiners’ records for suicide surveillance
and prevention research in Nova Scotia?
L. A. Campbell, MSc (1,2,7); L. Jackson, PhD (3,4); R. Bassett, PhD (5); M. J. Bowes, MD (6); M. Donahue, MDiv, MAHSR(c) (7);
J. Cartwright, MA (2); S. Kisely, MD, PhD (1,2,8)
This article has been peer reviewed.
Abstract
Introduction: Medical examiners’ records can contribute to our understanding of the
extent of suicide in a population, as well as associated sociodemographic and other factors.
Methods: Using a mixed methods approach, the key objective of this pilot study was to
determine the sources and types of information found in the Nova Scotia Medical Examiner
Service (NSMES) records that might inform suicide surveillance and targeted prevention
efforts. A secondary objective was to describe the one-year cohort of 108 individuals who
died by suicide in 2006 in terms of available sociodemographic information and health
care use in the year prior to death.
Results: Data extraction revealed inconsistencies both across and within files in terms
of the types and amounts of sociodemographic and other data collected, preventing correlational analyses. However, linkage of the records to administrative databases revealed
frequent health care use in the month prior to death.
Conclusion: The introduction of systematic data collection to NSMES investigations may
yield a comprehensive dataset useful for policy development and population level research.
Keywords: suicide, population surveillance, medical examiner, coroner, administrative data
Introduction
With approximately 90 recorded deaths due
to suicide in Nova Scotia each year, suicide is
a considerable public health problem,
despite being largely preventable.1 In addition to being highly traumatic for family
members and friends, suicide is costly.
The potential years of life lost (PYLL) due
to suicide are substantial: for those aged
under 74 years, only cancers (all sites), circulatory disease and unintentional injuries
accounted for more PYLL from 2005 to
2007.2 These figures may well be underestimates, since suicide is widely believed to be
underreported.
A number of factors contribute to the
under-reporting of suicides, such as failing to suspect suicide (particularly
among the elderly or in the absence of
notes or other indications of a possible
suicide). In addition, determining intent
is particularly difficult in some instances,
such as in deaths due to poisoning.
Rates of suicide by poisoning may be underestimated by approximately 30%, relating
to a 10% underreporting of overall suicide
rates.3 An Ontario study of the validity of
death certification of unnatural adult deaths
highlighted the difficulty in determining
intent due to the subjectivity of interpretation.4 Deaths due to hanging or inhalation
of noxious gas were more likely to be attributed to suicide than those due to poisoning
or drowning; death due to overdose of overthe-counter medication was certified more
frequently as suicide than death as a result
of heroin overdose. Increasing proof of
intent resulted in increased odds of correct
certification as suicide. In addition, some
physicians may be reluctant to report suicide as the cause of death due to stigma or
financial implications for family members.5
When suicide is suspected, the manner of
death is determined in a medico-legal process
that can be informed by different types of
evidence, including an investigation of the
scene, post-mortem examination results, collection of medical histories and circumstantial information. The systems for the
investigation of suicides vary across Canadian
provinces and territories; some jurisdictions
possess a medical examiner system and others
a coroner system.6 Medical examiners are
physicians, while coroners may have legal,
Author references
1. Department of Psychiatry, Dalhousie University, Halifax, Nova Scotia, Canada
2. Department of Community Health & Epidemiology, Dalhousie University, Halifax, Nova Scotia, Canada
3. School of Health and Human Performance, Dalhousie University, Halifax, Nova Scotia, Canada
4. Atlantic Health Promotion Research Centre Dalhousie University, Halifax, Nova Scotia, Canada
5. Faculty of Health Professions, Dalhousie University, Halifax, Nova Scotia, Canada
6. Nova Scotia Medical Examiner Service, Halifax, Nova Scotia, Canada
7. Capital District Health Authority, Halifax, Nova Scotia, Canada
8. Health LinQ, University of Queensland, Queensland, Australia
Correspondence: Leslie Anne Campbell, Room 230, Centre for Clinical Research, 5790 University Avenue, Halifax NS B3H 1V7 Tel.: (902) 473-7458; Fax: (902) 473-4546;
Email: leslie.anne.campbell@dal.ca
165
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investigative or medical backgrounds. In
1960, the Fatality Inquiries Act established
the Nova Scotia Medical Examiner Service
(NSMES); a 1989 amendment to the Act
established a provincial Chief Medical
Examiner (CME).6 The current iteration of
the provincial medical examiner system
operates out of a central office in Halifax,
Nova Scotia.
NSMES is responsible for investigating “all
deaths due to violence, undue means, culpable negligence and unexpected/unexplained
deaths throughout the province,”6 which
includes all deaths due to suicide. The primary role of NSMES is to identify the decedent; establish the date, time, place and
cause of death; and, in the case of apparent
suicide, determine the intent. These duties
are described in detail in the Nova Scotia
Fatality Investigations Act.7 The scope of
each investigation varies depending upon
the circumstances of death, but the aim is
always to determine intent.
Clearly, accurately classifying suicide is necessary to identify those factors that may serve
as target points for intervention and prevention strategies. However, a lack of standardized criteria for classifying suicide and
difficulties in applying these criteria in a
consistent fashion contribute to potential
inaccuracies in classification.4,8,9
Despite these limitations, medical examiners’
records are important sources of information
and may contribute to our understanding of
both the extent of suicide in a population
and associated sociodemographic and other
factors.9-14 Similar records have proven useful
for research and surveillance in other jurisdictions, including elsewhere in Canada,
England and the United States.11,13,15-20 However, information collected by NSMES to date
has not been used for surveillance, and only
on occasion for research.21
Research suggests several individual risk
factors associated with suicide: many decedents have a history of mental health or
addiction problems22,23,24 and men and boys
appear to be at elevated risk, often through
the use of more lethal methods.5,15,20,25,26
Other reported risk factors include increasing age,26 rural residence,18 household firearm ownership,27 social isolation,25 low
socio-economic status,18,26 chronic pain, terminal illnesses or disabilities,28 or being the
victim or perpetrator of domestic violence.20
NSMES
investigations
provide
an
opportunity to collect more detailed
information, including on known risk
factors. Further, medical examiner and
other death investigation systems have
specific geographical mandates, creating population-based data sources. Death
certificates or trauma registries contain
incomplete information about deaths
due to suicide, and as such cannot alone
inform prevention policies or epidemiological research.
The purpose of our research was to examine
the content of the information collected by
NSMES for suicide cases to: (1) determine
the types and sources of available information that might be useful for suicide prevention research; and (2) develop a “profile”
of suicides in order to highlight the information that could be used as part of an
ongoing surveillance system. For the latter
objective, we linked each suicide to health
service data from the provincial administrative databases to provide a profile of health
service use in the year prior to the death.
The Dalhousie University Ethics Review Board
and the Nova Scotia Department of Justice
reviewed and approved the research prior
to the collection of any data.
Methods
We used a mixed methods approach,
the qualitative component to assess the
types and sources of information available in the files, and the quantitative
component to provide a “profile” of
suicides in Nova Scotia. For each component, we manually extracted data from
NSMES records for all deaths due to suicide
for a one-year period from January 1, 2006,
to December 31, 2006 (n = 108). We chose a
one-year period in order to obtain enough
data to effectively assess the types and sources of information in the files and to build
a profile of suicides; the year 2006 was the
most recent one-year period for which all
files on suicide were “closed,” that is, no
new information would be added to the file.
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
166
Qualitative component: types and sources
of information
For the qualitative component of the study,
our research assistant reviewed each suicide file to record the existence of discrete
sociodemographic and other related information (e.g. where the body was found) and
ascertain other types of information within
the files and the source(s) of this information. For example, information given by a
family member concerning the social life
of the decedent was recorded as “family
member provides social information,” with
no other identifying information.
Data regarding the types and sources of other
information were extracted and recorded
in a text document. This text document was
then imported into the computer software
program NVivo 7 (QSR International) to
manage and sort by source and type of information. Our primary qualitative researchers
(LJ, RB) regularly provided feedback throughout the extraction and sorting process to
ensure that a comprehensive listing of types
and sources of information was captured.
Memos were developed and constantly updated throughout data extraction to note
any modifications to the working definitions
of categories of sources and types of information. Modifications were made when a
working definition was deemed incomplete.
We developed various categories (e.g. legal
issues, social issues) for the different types of
information and defined sources as the people (e.g. physicians), places (e.g. morgues)
and documents (e.g. health records) that
provided information.
Quantitative component: profile of suicides
The quantitative component of the study
consisted of constructing an anonymized
Access 2003 (Microsoft) database based on
the information extracted manually from
the NSMES files. The database included
available information collected by the
medical examiner service on demographic,
personal, social and event-related factors
(e.g. cause of death, precipitating circumstances) and prior health service use. Data
were exported from the database into an
Excel 2003 (Microsoft) spreadsheet and
checked for duplicates and errors before
being analysed using Statistical Package
for Social Sciences v 12 (SPSS).
Where possible, these data were linked to
the provincial health service administrative
databases to determine decedents’ health
service use (inpatient and outpatient general
and mental health services) in the final
year of life. We used the following datasets
held by the Population Health Research Unit
(PHRU) in the Department of Community
Health and Epidemiology at Dalhousie University: Canadian Institute for Health Information (CIHI) Discharge Abstract Database
of hospital admission/separation dates and
diagnostic codes; fee-for-service claims by
physicians; and Mental Health Outpatient
Information System.
Linkage of the databases was made possible
by means of encrypted health card numbers
in a process approved by the Department
of Justice, the Dalhousie University Research
Ethics Board and the PHRU Data Access
Committee.
We calculated quantitative descriptive statistics (rates, percentages) for individual
demographic factors reported in the NSMES
files and prior health service use in Nova
Scotia over a one-year period. Incomplete
data capture precluded analysis of known
risk factors.
Due to the need to suppress small cells to
protect the anonymity of decedents, we classified health care episodes only as mental
health or non-mental health, and reported
for the year and the month prior to suicide.
Despite this relatively high level of aggregation, we were unable to report the specific
types of health care use (i.e. inpatient vs.
outpatient, mental health vs. non-mental
health) within the week prior to suicide due
to small numbers. A sample size or power
calculation was not required, as the project
involved reporting all cases of suicide in
Nova Scotia over the given time period and
specific hypotheses were not tested.
structure: information about all processes
and communications related to events from
the time the medical examiner was contacted
until the file was closed and an official report
completed by the Chief Medical Examiner.
However, the files varied greatly in terms
of details.
All files provided information on age, sex,
address of residence, the place where the
body was found and cause of death. Other
sociodemographic and related information, such as marital and employment status,
was recorded to varying degrees and sometimes inconsistently. For example, in one section of the file the decedent might be described
as married, but in another as separated.
We identified 16 different types of information (e.g. autopsy information, death scene)
from the 108 files (see Table 1). We deemed
the frequency of information common if it
was in 60% or more of the files, and less
common if in fewer than 60% of the files.
We also found and classified 10 sources of
information. Of these 10 sources, 5 were
classified as common sources of information as they were in all or the majority (i.e.
60% or more) of files: family/friends, health
records, medical examiner(s)/investigators,
physicians (including military physicians)
and police (including military police). Fewer
than 60% of the files contained information
Quantitative component
The derived quantitative database included
available information from the 108 files of
decedents’ demographics, place of suicide,
disclosed intent, cause of death, prior health
care contacts, previous suicide attempts, medical and psychiatric diagnoses, and precipitating circumstances. Basic demographic factors (age, sex, address, cause of death and
place of death) were recorded consistently
across files.
From this database, we determined that
the mean age of decedents was 44.7 years
(standard deviation [SD] ± 13.3 years) and
individuals in their forties made up onethird of the cases (n = 36) (see Table 2).
The female to male ratio was 1:5, with 18
(16.7%) decedents female and 90 (83.3%)
male. Just over half the sample lived in
rural areas (defined as those areas outside
Halifax Regional Municipality), which is similar to the general Nova Scotian population
average of 59% in 2006.29 The most common
causes of death were hanging (38.9%), selfpoisoning (24.1%) and firearm injuries
(19.4%). The most common locations were
at home (56.5%) or in a public place such
as a bridge, park, woods or beach (27.8%).
Table 1
Types of information from NSMES records of suicide case filesa
Frequency of information
Type of information
Common
(i.e. present in 60% or more files)
Autopsy information
Cause of death
Death circumstances
Death notifications – procedures
Death registration
Death scene
Health information
Immediate prior activities
Medical/police response/activities
Place and details/accounts of body discovery
Sociodemographic information
Sociopersonal information
Less common
(i.e. present in fewer than 60% of files)
Critical life incidents
Legal issues
Request for specific records or information (e.g. dental records)
Suicide plans or attempts
Results
Qualitative component: types and sources
of information
In a population of 913 462 in Nova Scotia
in 2006, 108 deaths were due to suicide.29
Each of these deaths had been investigated
by NSMES and therefore had a file on record.
Each of the 108 files showed the same basic
from other sources; these included consultants (e.g. neuropathologists), emergency medical responders, funeral homes,
morgues and tissue banks.
Abbreviations: NSMES, Nova Scotia Medical Examiner Service.
a
All cases of death due to suicide manually extracted from NSMES records from January 1, 2006, to December 31, 2006.
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Differences in cause of death by sex were
apparent: the most common forms of suicide
among women and girls were self-poisoning
(38.9%) and hanging (33.3%); among men
and boys, these were hanging (40%), firearm
injuries (23.3%) and self-poisoning (21.1%).
All of the decedents who died by firearm
injury were male, with two-thirds of these
deaths due to long gun (rifle or shotgun)
discharge. While not all precipitating circumstances were captured in the NSMES
files, all of the 18 cases in which a recent
break-up of a relationship was reported
involved male decedents.
Aside from basic demographic information,
not all files contained the same amount of
information. For example, while the age and
sex of decedents were in all files, employment
status was missing in 43.5%. Most files
(69%) were missing information on known
previous suicide attempts, and 28% lacked
information on any psychiatric diagnoses.
In the case of deaths by hanging, 98% were
missing information on the ligature source,
point and degree of suspension. Similarly, in
the case of firearm deaths, 90% lacked information regarding ownership, license status
and storage of the firearm.
We supplemented the health service use
data by linking our derived database with
the provincial administrative health services
databases using encrypted health card numbers. Of those decedents whose health card
numbers were retrievable (n = 101), most
(74%) had been in contact with health services (either as an in- or outpatient) in the year
prior to suicide; over half (55%) had been
seen as outpatients and nearly one-quarter
(23%) had been hospitalized for mental
health reasons in the year preceding suicide;
10% had been in hospital for mental health
reasons in the month prior to suicide; 16%
had had some form of contact with the
health care system within the week prior to
suicide; and 9% were seen as outpatients
by either a GP or psychiatrist for mental
health reasons in the week prior to suicide.
Discussion
The NSMES files can serve as a rich source
of information for surveillance and suicide
prevention efforts. They can provide more
detailed data than the provincial health
service administrative databases, including
as they do information on precipitating circumstances such as relationship break-ups,
marital problems, employment losses, encounters with violence (either as perpetrator or victim), legal problems and problems
with school, work or finances. Since NSMES
conducts an autopsy on all deaths by suicide
or potentially by suicide, their records necessarily include a far more complete source of
medical comorbidities than any other database.
Our review of the NSMES files found that
some sociodemographic information (i.e. age,
address, sex, marital status) was recorded in
all of the files, although marital status was not
always consistently recorded. Other information (e.g. employment status) was not always
recorded although such information would
be useful for surveillance and prevention
research purposes. Our findings are in keeping with the results of a 2005 study of coroners’ files in England in which demographic
characteristics such as sex, age and marital
status were generally well recorded, but
employment information was missing in
over one-third of cases, precluding robust
socio-economic classification.13
The relative consistency of recording basic
demographic information allowed us to
provide a general profile of individuals who
died by suicide in Nova Scotia over a oneyear period. Our findings of higher rates
among men and boys, and those in mid-life,
were consistent with patterns observed in
other jurisdictions.5,15,20,25,26,30 In our study, as
in others, men and boys were more likely
to use highly lethal means of suicide, likely
increasing the odds of classification as
suicide.15,20,25 Lack of consistency of collection of information regarding other risk factors prevented us from conducting more
sophisticated analyses.
Information on known risk factors, such as
health issues, can inform surveillance and
prevention efforts. In particular, information
about mental illnesses (e.g. personality disorders or major depressive episodes), substance use and/or multiple chronic physical
health problems is useful since such health
issues place individuals at higher risk of
suicide.22,31 However, such information was
variably reported in the files we examined.
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
168
We were able to overcome this limitation, to
some extent, by linking with health records
from provincial administrative databases
when valid encrypted health card numbers
were available for decedents (101 of 108
files). Nevertheless, most health-related information was not consistently available in the
NSMES files.
Firearm data may be particularly useful for
informing public policy, yet our study demonstrates that most files do not contain information on ownership, license status and storage. In the case of deaths by hanging, ligature
information is similarly scarce. However, this
may be less relevant for policy development
as ligature materials are widely available to
the public. Such information may be of greater relevance in institutional settings.
Other socio-economic conditions and factors,
such as living on social disability, low income,
low educational attainment, significant losses
(e.g. of relationships or employment), a criminal record (and related fears of arrest or
imprisonment) and social isolation, are also
major potential risk factors for suicide.32-34
This information is also variably recorded
in the NSMES files. This problem is neither
unique to Nova Scotia nor to Canada: such
a limitation has also been reported by
researchers examining coroners’ or medical
examiners’ reports in other jurisdictions.9,13
There appear to be at least four main reasons
for the variations across files, as well as the
inconsistencies within files: (1) information is
collected by different people (e.g. various investigators, police officers, etc.) who may
record information to varying degrees; (2)
information is collected from different sources
(e.g. family, friends or physicians) who may
know the decedent in different ways and to
varying degrees or who may interpret the
investigators’ questions in different ways;
(3) the medical charts of decedents may not
always be requested, received or recorded
consistently; and (4) there is no structured
interview procedure used when most of the
social and medical/health information is
gathered from family and friends in particular. Collecting information from family or
friends may be further complicated by their
hesitation to report any declarations of intent
because of financial reasons (e.g. insurance)
or the stigma associated with suicide.
Table 2
Demographic description of suicide cases in
NSMES records from January 1, 2006,
to December 31, 2006 (N = 108)a
Characteristic
Number of cases,
n (%)
Age, years
<30
30–39
40–49
50–59
60–69
≥ 70
15 23 36 21 7
6
(13.9)
(21.3)
(33.3)
(19.4)
(6.5)
(5.6)
Sex
Male
Female
90 18 (83.3)
(1.7)
Place of Residence
Urban
Rural
52 56 (48.1)
(51.9)
Cause of Death
Hanging
Self-poisoning
Firearm injury
Drowning
Blunt force injury
Other
42 26 21 6
5
8
(38.9)
(24.1)
(19.4)
(5.6)
(4.6)
(7.4)
61 30 (56.5)
(27.8)
6
6
(5.6)
(5.6)
5
(4.6)
Location of Death
Home
Public (e.g.
bridge, woods)
Vehicle
Property of
family or friends
Other
Abbreviations: NSMES, Nova Scotia Medical Examiner
Service.
All cases of death due to suicide manually extracted
from NSMES records from January 1, 2006, to
December 31, 2006.
a
These explanations all point to an overarching principle: data collection by a medical
examiner or coroner takes place in an investigative context, not a research context. As
such, the goal is to determine the cause and
circumstances of individual deaths and, in
the case of suicide, to determine intent, not
to collect standardized data. However, systematically collected information would contribute to a rich source of data useful for
population level surveillance and prevention
research activities.
The relevance of this information is not limited to Nova Scotia. Statistics Canada has
initiated a Canadian Coroner and Medical
Examiner Database (CCMED) that will store
information on deaths reported by coroners
and medical examiners.35 This will facilitate
the identification and characterization of
emerging and known safety hazards, thus
contributing to the prevention of avoidable
deaths among Canadians. The ability of the
CCMED to meet this objective will depend
upon the quality and completeness of the
data.
In order to provide a complete, representative Nova Scotian database, we recommend that the fields for collection be
determined and populated consistently
during medical examiners’ investigations. While the operational impact of this
change may be minimal, this endeavour
is a marked conceptual departure from the
way the NSMES is currently described in
legislation.
Limitations
Qualitative component. Given that data were
collected over a one-year period, there may be
other types and sources of information provided in files outside of this period. However,
many of the types and sources of data found
in our review were repeated across files, suggesting that we were able to determine most,
if not all, types and sources of information.
Quantitative component. We had planned to
determine whether certain types of information about the suicide (e.g. information
about mental health issues) might be collected systematically according to sociodemographic characteristics (e.g. age category,
sex). However, during data collection and
analysis we discovered that there were few
structured questions consistently asked of
each suicide, resulting in incomplete data
capture, and therefore this type of analysis
could not be undertaken. We were able to
overcome this limitation in the case of health
service use by linking with administrative
databases, but we were otherwise unable to
determine associations between variables
that have been identified as risk factors for
suicide (e.g. mental health problems).
Small cell sizes were also limiting. We suppressed cells smaller than 5 to prevent inadvertent identification of individuals. Future
work could include preparation of a larger
historical cohort.
Conclusion
To date, the data collected by NSMES in the
course of its investigations have not been
169
analysed or used for surveillance or ongoing
prevention research purposes. Our study
found that much of the information collected by medical examiners in Nova Scotia
varies and as such cannot be fully used to
develop a provincially representative, robust
surveillance system inclusive of a number
of suicide risk factors. There appear to be two
key issues with respect to the use of medical
examiners’ data for suicide surveillance and
prevention research: (1) inconsistencies in
some of the sociodemographic information
collected and recorded across files, as well
as inconsistencies within the files, and (2)
significant variations across files in the
amount of social, medical/health and other
information provided or recorded.
The use of routinely collected data provides
a feasible means of surveillance. NSMES
records can provide information on all deaths
deemed to be due to suicide. Use of a standardized interview instrument or data collection tool in the course of investigations
would help ensure completeness of the data.
The instrument may include closed-ended
questions, which would be useful for populating a research database; however, we recognize that the unique nature of each investigation prohibits the implementation of a
single uniform set of closed-ended questions.
The resulting comprehensive data set may be
used to assist in our understanding of suicide
in the population, including the use of common methods and associated sociodemographic factors, as well as to identify opportunities for intervention. Reconstructing the
NSMES system to serve this important public health purpose will likely require legislative changes.
Acknowledgements
The authors wish to thank the Nova Scotia
Department of Justice for access to the records of the Nova Scotia Medical Examiner
Service (NSMES). The administrative data
were made available by the Population Health
Research Unit (PHRU) within Dalhousie University’s Department of Community Health
and Epidemiology. The Province of Nova
Scotia supplies the PHRU with physician
billing and hospital discharge abstracts
suitable for research purposes. This study
was supported by funding from the Nova
Scotia Department of Health Promotion and
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
Protection. The opinions, results and conclusions reported in this paper are those of the
authors and are independent from the funding and data sources. No endorsement by
the Nova Scotia Departments of Health and
Wellness or of Justice is intended or should
be inferred.
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Cross-Canada Forum
Online resources to enhance decision-making in public health
D. Finkle-Perazzo, MA (1); N. Jetha, MPH (in progress) (2)
This article has been peer reviewed.
Introduction
A virtual front door, the Canadian Best
Practices Portal for Health Promotion and
Chronic Disease Prevention (“the Portal”)
provides access to evaluated community
and population health interventions relevant
to chronic disease prevention and health
promotion.1 Designed to help Canadian public health practitioners and decision makers
identify suitable interventions that they can
adapt and replicate to meet their needs, the
Portal is a highly accessible, easy to use and
dynamic.1 It has a flexible search function
and is supported by an extensive array of
resources to inform policy and practice.1
Launched in 2006, the Portal forms a central pillar of the Canadian Best Practices
Initiative, which was established by the
Public Health Agency of Canada (PHAC) to
improve policy and program decision-making
by enabling access to the best available evidence on chronic disease prevention and
health promotion practices.1 Throughout
each phase of the Portal’s development, more
and more current public health topics and
new decision-making tools have been added.
As of February 2011, the Portal provides
information on about 357 interventions and
access to 58 resources.
In this article, we aim to demonstrate the
unique role of the Portal within the broader
context of other available online resources.
We use the concept of a “pyramid of
evidence”2 to compare the Portal with one
specific resource, Health-evidence.ca, to
illustrate how public health practitioners
and decision makers can use these resources
together to make better, more evidenceinformed decisions.
Evidence-informed decisionmaking within the public health
sector in Canada
A key recommendation of the final report
of the National Forum on Health, Canada
Health Action: Building on the Legacy, was
to develop an evidence-informed health care
system where high quality research influences policies and clinical decisions.3 Since
then, there has been a significant effort to
promote evidence-informed health practices
and to establish resources for knowledge
transfer in both the clinical and the health
promotion settings.
Nevertheless, the public health sector in
Canada still faces significant barriers to making evidence-informed decisions.4 Obstacles
include individual barriers, such as lack of
time and skill; organizational barriers, such
as a lack of human resources; no clearly
communicated values for evidence-informed
decision-making (EIDM); lack of input from
all levels of the organization; lack of leadership and champions; and inadequate resources and infrastructure to promote and support EIDM.4 Decision makers also have an
ongoing need for better access to systematic
reviews so that their decisions are relevant
and applicable to the “real world” practice
setting.5
Improving the process of evidence-informed
decision-making
The process of EIDM involves translating
the best available evidence from a “systematically collected, appraised, and analyzed
body of knowledge”6 in a four-step process
described by Robeson et al. as follows:
“1) clearly articulating a practice-based
issue; 2) searching for and accessing
relevant evidence; 3) appraising methodological rigour and choosing the most
synthesized evidence of the highest quality and relevance to the practice issue and
setting that is available; and 4) extracting,
interpreting, and translating knowledge,
in light of the local context and resources, into practice, program and policy
decisions.”4
While the need to address the individual and
organizational barriers to advancing and
sustaining EIDM remains,4 a recent proliferation of online resources provides decision
makers with a range of high quality research.
For example, PHAC also launched the
Canadian Taskforce on Preventive Health
Care to develop clinical practice guidelines
that support primary care providers in delivering the best possible preventive health
care.7 Other Canadian sites include HealthEvidence.ca, which is partly funded by PHAC,
as well as the Public Health Plus website*
from the National Collaborating Centre for
Methods and Tools.8 Other sites include the
Guide to Community Preventive Services
website† from the Centers for Disease
Con-trol and Prevention, Cancer Control
P.L.A.N.E.T.‡ and The Cochrane Library.§
Each of these offers different categorizations
and levels of evidence on effective public
health practice, with various focal points.
*http://www.nccmt.ca/tools/public_health_plus-eng
.html
†http://www.thecommunityguide.org/index.html
‡http://cancercontrolplanet.cancer.gov/
§http://www.thecochranelibrary.com/view/0/index
.html
Author references
1. Wordsmith Writing and Editing Services, Ottawa, Ontario, Canada
2. Public Health Agency of Canada - Evidence and Risk Assessment Division, Ottawa, Ontario, Canada
Correspondence: Nina Jetha, Manager, Canadian Best Practices Initiative, Public Health Agency of Canada, 7th Floor, 785 Carling Avenue, AL 6807B, Ottawa ON K1A 0K9;
Tel.: (613) 952-7608; Email: nina_i_jetha@phac-aspc.gc.ca
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
172
Several are searchable databases that provide a wide range of information and often
require training in search techniques. As a
result, they can be daunting to those with
limited time and expertise.
Dicenso et al. proposed a pyramid of preprocessed research evidence that can reduce
the time spent finding synthesized research
evidence to inform policy and practice.2 The
shape encourages the search for evidence
to begin at the top of the pyramid. This holds
the most synthesized evidence whereas the
bottom holds evidence in its most raw form.
Many users generally start their search the
other way around, with the most raw information, which can be very overwhelming.
In many cases, they stumble upon more
highly synthesized evidence only by chance.4
Figure 1 shows DiCenso’s pyramid of evidence using the example of a search focused
on the issue of exercise and adolescents.
The Canadian Best Practices Portal
The Canadian Best Practices Initiative1 was
the outcome of five years of Health Canadafunded work by Michael Goodstadt and
Barbara Kahan at the University of Toronto.
Their work led to the development of the
Interactive Domain Model (IDM) Best
Practices¶ and, ultimately, the Canadian
Best Practice System for Chronic Disease
Prevention and Control.9
The Canadian Best Practices Portal was born
of these initiatives. Its key purpose is, quite
simply, “to help public health decision-makers make better decisions.” The Portal is
built upon the population-health approach,
which recognizes that health is a capacity
or resource rather than a state, a definition that corresponds more to the notion
of being able to pursue one’s goals, to
acquire skills and education, and to grow.
This broader notion of health recognizes
the range of social, economic and physical
environmental factors that contribute to
health. The best articulation of this concept
of health is “the capacity of people to adapt
to, respond to, or control life’s challenges
and changes.”10
Figure 1
A pyramid of pre-processed research evidence focused on the issue of exercise and adolescents
“exercise” AND
“adolescent”
0
Systems
Best Practice Portal: 3
Summaries
Synopses of Syntheses
Health-evidence.ca: 12
Health-evidence.ca: 53
PubMed: 1647
Syntheses
Synopses of Single Studies
0
PubMed: 22 748
Google Scholar:
394 000
Google:
4 270 000
Based on: DiCenso A, Bayley L, Haynes RB. Accessing pre-appraised evidence: Fine-tuning the 5S model into a 6S model.
Evid Based Nurs. 2009; 12:99-101.
Studies
Over the years, the Portal has steadily grown
to include more current public health topics
and new decision-making tools. Its search
function is designed to help public health
decision-makers identify interventions that
meet their particular needs.
Key features of the Canadian
Best Practices Portal
The Portal includes a searchable database
of evaluated community and population
health interventions that can be replicated
and adapted for use in similar fields. This
can be a real time-saver for program and
policy development and evaluation. Acting
as a single point of access to evidenceinformed best practices, the Portal makes
public health planning easier and more
efficient. Interventions are categorized by
chronic disease/condition, health promotion topics, behaviour-related risk, strategy, population, determinants of health,
country of origin and language. Searches
can combine any of these categories and
can be further narrowed by setting or by
keywords. The information on interventions is well organized and easy to use. In
the case where two or more interventions
could be applicable, definitions described
in a hierarchy of evidence11 help users
assess both qualitative and quantitative
research evidence.
The interventions included in the Portal have
all been consistently and rigorously screened
through a comprehensive set of selection
criteria that consists of six key steps:
1.Literature and collection search by
priority topic;
2.Assessment of quality of
evaluation or study design;
3.Search for additional information on
selected individual interventions;
4.Expert review using inclusion criteria;
5.Prioritization of selected
interventions for annotation; and
6.Selection of resources.
This intensive screening process ensures
that Portal content is made up of best
practices (supported by systematic reviews
and experimental designs) and promising
practices (supported by quasi-experimental design and/or observational studies).
However, it is important to note that the
scientific quality of evidence in the Portal
varies due to differences in the evaluation
approaches used by the interventions.12
(More information on the selection and
screening process is available elsewhere.13)
¶ http://www.idmbestpractices.ca/idm.php
173
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The Portal also includes a selection of resources that help practitioners reach their
public health planning, chronic disease
prevention and health promotion goals. The
resources—websites, documents, systematic
reviews, databases, manuals and online tutorials—have been selected based on their specific ability to assist Portal users in making
evidence-informed decisions. They are organized according to the National Collaborating
Centre for Methods and Tools’ seven steps of
evidence-informed public health.14
Health-evidence.ca
Dr. Maureen Dobbins at McMaster University
established the Health-evidence.ca project
to promote ongoing collaboration between
the research community and the decisionmaking and practice setting. This initial goal
evolved over the years to include an emphasis on facilitating the adoption and implementation of effective policies/programs/
interventions at the local and regional
public health decision-making levels across
Canada.15
Health-evidence.ca is provided at no cost
to users; despite that, it exists without any
permanent funding and has received funding
from a variety of agencies.15 It offers a searchable online registry of systematic reviews
about the effectiveness of public health and
health promotion interventions. The registry
is one part of a much larger and more comprehensive knowledge transfer and exchange
site that will support users in accessing and
interpreting research evidence. This approach
connects users across Canada (and internationally) who work in similar areas or
have similar interests.15
Key features of Health-evidence.ca
Users of Health-evidence.ca are able to manage and tailor the information they receive
to their particular areas of interest. Usability
is also enhanced by a searchable registry that
recognizes commonly used public health and
health promotion terms and categories
(e.g. focus of the intervention, intervention
strategy, intervention location, and target
population).15
FIGURe 2
Results of a Canadian Best Practices Portal search on exercise programs for adolescents
Title
Intervention Characteristics
Evaluation Methodology/Design
Jump Into Action
Quantitative
The Fourth R:
Skills for Youth relationships
Quantitative
Youth Fit for Life (RTIPS)
Quantitative
The reviews provided by Health-evidence.ca
have been assessed using a rigorous process
that includes an examination of methodological quality and ratings by two independent
reviewers. Users are able to sort search results
by the level of review quality (e.g. strong, moderate, or weak). Built-in feedback links also
request input on how to improve the site.15
What is the difference between the Portal
and Health-evidence.ca?
The key difference between the Portal and
Health-evidence.ca is that the former provides
more information about actual interventions
and resources while the latter focuses on the
effectiveness of interventions and presents
only pre-appraised and pre-synthesized information via systematic reviews.
DiCenso’s pyramid of evidence identifies
resources at six levels of evidence. In general,
resources provided by the Portal fall within
the category of “syntheses” or “studies.”2
(see Figure 1). In contrast, Health-evidence.
ca’s resources can be categorized as “syntheses” that combine (using explicit and
rigorous methods) the results of multiple
single studies to provide a single set of findings, with some “synopses of syntheses.”2
Resources from the Portal are pre-screened
to meet certain inclusion criteria, and resources from Health-evidence.ca are both prescreened and pre-appraised (filtered to include
only those studies of the best quality). Both
these sources are also updated regularly so
that the evidence is current.
The services and information provided through
Health-evidence.ca overlap with those of the
Portal, in that both focus on health promotion.
However, Health-evidence.ca also addresses
broader public health issues, such as immunization and emergency preparedness.16
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174
How decision-makers can make
the most of the Portal and other
online resources such as Healthevidence.ca
By partnering with Health-evidence.ca, Portal
searches are now supported by published
systematic reviews that evaluate the effectiveness of public health interventions. Systematic reviews synthesize all the research that
exists about an intervention and provide a
much better understanding of the effectiveness of an intervention than do single studies.
Consider the example of a busy local public
health planner who is charged with developing an exercise program for adolescents. An
initial step would be to seek other, relevant
programs that might be adapted, thereby saving valuable time and resources. Most planners would probably begin looking for information by conducting a web search. However,
the terms “exercise” and “adolescent,” for
example, would generate 4 270 000 hits using
the Google search engine, 394 000 hits using
the Google Scholar search engine and 22 748
hits using the PubMed database. It is quite
likely that this amount of information would
be both overwhelming and extremely discouraging.
In contrast, using Health-evidence.ca as a starting point, the same terms (“exercise” and “adolescent”) lead to 12 articles that can be sorted
according to their date of publication or
strength of evidence. Alternatively, consulting
the Portal produces the list of programs/intervention shown in Figure 2.
Let’s say that the planner decides to investigate “Jump into Action.” Clicking on the
intervention title opens a page that provides a description of the program, a link
to the intervention site, additional web
links, and other details such as country
of origin, evaluation design, language and
the primary source document. Following
this process, the planner efficiently finds
15 high quality resources that increase the
potential of developing a better quality,
more targeted intervention.
2.
DiCenso A, Bayley L, Haynes RB. Accessing
pre-appraised evidence: Fine-tuning the 5S
model into a 6S model. Evid Based Nurs.
2009;12:99-101.
3.
National Forum on Health. Canada health
action: building on the legacy – Volume 1
– The final report [Internet]. Ottawa (ON):
Health Canada; 1997 [cited 2011 Apr 26].
Available from: http://www.hc-sc.gc.ca
/hcs-sss/pubs/renewal-renouv/1997-nfoh
-fnss-v1/index-eng.php
Conclusion
There are many important contextual factors to consider when planning programs
for health promotion and chronic disease
prevention, such as the breadth of research
support, the applicability of the evidence
in a variety of settings, political and economic factors, and the general feasibility
of the intervention.11 However, above all,
front-line health practitioners and decision
makers working in public health need efficient and easy access to good quality information to enable better, more informed
decisions about the services and programs
they offer.
Although planners appreciate its importance, many are daunted by the process
of analyzing and reviewing evidence to
ensure that the programs they study are
effective. Fortunately, Canadian planners
can use a variety of resources that offer
access to public health reviews and interventions. By using a hierarchical pyramidof-evidence approach, planners can quickly
access the high quality evidence needed to
build the best possible programs.
4.
5.
References
1. About the Canadian Best Practices Portal
[Internet]. Ottawa (ON): Public Health Agency
of Canada; [cited 2011 Apr 26]. Available from:
http://cbpp-pcpe.phac-aspc.gc.ca/about
/portal-eng.html
Dobbins M, Jack S, Thomas H, Kothari A.
Public health decision-makers’ informational
needs and preferences for receiving research
evidence [Internet]. Worldviews Evid Based
Nurs. 2007 [cited 2011 Apr 26];4(3):156-63.
Available from: http://health-evidence.ca
/downloads/Dobbins2007Public_Health
_Decision-Makers_Informational_Needs.pdf
6. Brownson RC, Fielding JE, Maylahn CM.
Evidence-based public health: a fundamental
concept for public health practice. Annu Rev
Public Health. 2009;30:175-201.
7.
Acknowledgements
The authors would like to acknowledge
with thanks, the invaluable advice provided by Dr. Donna Ciliska, professor
at McMaster University and Scientific
Director at the National Collaborating
Centre for Methods and Tools.
Robeson P, Dobbins M, DeCorby K, Tirilis
D. Facilitating access to pre-processed research
evidence in public health [Internet]. BMC
Public Health. 2010 [cited 2011 Apr 26];10:95.
Available from: http://www.biomedcentral
.com/content/pdf/1471-2458-10-95.pdf
8.
9.
Canadian Task Force on Preventive Health
Care. [Internet]. Ottawa (ON): Public
Health Agency of Canada; 2011 [cited
2011 Apr 26]. Available from: http://
www.canadiantaskforce.ca/index.html
Welcome to National Collaborating Centre
for Methods and Tools [Internet]. Hamilton
(ON): National Collaborating Centre for
Methods and Tools; [cited 2011 Apr 26].
Available from: http://www.nccmt.ca/index
-eng.html
10. Frankish CJ, Green LW, Ratner P A, Chomik
T, Larsen C. Health impact assessment as a
tool for health promotion and population
health. (1996) Report for Health Canada:
Ottawa.
11. Jackson SF, Fazal N, Giesbrecht N. A hierarchy of evidence: which intervention has
the strongest evidence of effectiveness?
[Internet]. Ottawa (ON): Public Health
Agency of Canada; 2008 [cited 2011 Apr 26].
Available from: http://cbpp-pcpe.phac-aspc
.gc.ca/pubs/hierachy_of_evidence.pdf
12. Dubois N, Jetha N, Robinson K, Szuto I,
Wan G, Wilkerson T. Canadian Best Practices
Initiative methodology background paper
[Internet]. Ottawa (ON): Public Health
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-aspc.gc.ca/pubs/CBPI-methodology.pdf
13. Understanding how interventions are chosen:
summary of search, selection and inclusion
process and criteria. [Internet]. Ontario (ON):
Public Health Agency of Canada; [cited 2011
Apr 26]. Available from: http://cbpp-pcpe
.phac-aspc.gc.ca/selection-eng.html
14. National Collaborating Centre for Methods
and Tools. Evidence-informed public
health: [Internet]. Hamilton (ON): National
Collaborating Centre for Methods and Tools;
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15. Health-evidence.ca. About Us. [Internet].
Hamilton (ON): McMaster University; c2003
[cited 2011 Apr 26]. Available from: http://
health-evidence.ca/html/AboutUs
16. Daghofer D. The value-added investment
of the Canadian Best Practices Portal to the
Public Health Agency of Canada. Ottawa
(ON): Public Health Agency of Canada; 2008.
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Workshop report
International roundtable on the self-management support
of chronic conditions
S. L. Mills, PhD (1); E. Vanden, MSW (2)
Abstract
An international roundtable on self-management support (SMS) for persons living with
chronic conditions (CCs) was held in Vancouver, Canada, in June 2009. It brought together
23 leading researchers, policy makers, health care practitioners and consumers from
Canada, Australia, New Zealand, the United Kingdom and the United States. It also provided a forum for critically reflecting on SMS approaches and for building consensus on
how to move forward in the self-management field. The deliberations resulted in a draft
international framework that identifies key definitions, principles and strategic directions
and also outlines sample strategies to guide those working to develop SMS capacities at the
local, regional or national level. The framework is a mechanism for knowledge exchange
that will hopefully act as a catalyst to shift SMS-related policy, practice and research directions to better serve the needs of all CC populations. More than 400 multi-level stakeholders in the Canadian and international community have been invited to review the
framework using an e-consultation process. The final framework is scheduled for release
in the late fall of 2011.
Keywords: self-management, chronic disease, chronic conditions, health policy,
health care reform, international collaboration, framework
Introduction
Self-management support (SMS) has become
an integral component of the management
of chronic conditions (CCs) and has been
promoted as an important part of the solution to the individual, social and economic
consequences of CCs.1-4 As an essential
component of the Chronic Care Model,5 SMS
activities have also become an important
consideration in many health care reforms.
Self-management includes the tasks that
individuals engage in to manage their symptoms and treatments and the physical, emotional and social consequences of living with
CCs everyday.6 SMS, on the other hand, is
the broader domain of activities provided by
people, organizations and systems to
support and increase people’s ability to
self-manage their CCs. SMS includes infrastructures and policies, supportive services
and programs, and skills, resources and
social networks.7,8
A number of governments, health authorities,
health care facilities, professional associations and non-profit organizations are promoting initiatives in SMS-related research,
policies and programs to help reduce the
various impacts of illnesses such as arthritis, diabetes, heart disease, multiple sclerosis, depression and HIV/AIDS. In Canada,
SMS activities are developing at local, regional, provincial and national levels. These
include an environmental scan of Canadianbased CC SMS activities funded by the
Public Health Agency of Canada9 as well
as efforts to improve primary health care
delivery (i.e. family health teams) to better
align SMS activities with the needs of the
CC population.9-11
However, the development of new models
and innovative approaches raises questions
on the complex issue of the quality and
effectiveness of programs, engagement of
health care providers, integration with primary care, community participation in program development, potential harms and
benefits of certain programs, and the limitations of some individuals to effectively
self-manage their conditions. Gaps exist in
integrating knowledge about self-management across fields of research; for example,
the vast amount of qualitative literature
on how people manage their CCs has not
been well integrated with the literature and
research on self-management. Similarly,
knowledge on self-management from critical and social perspectives in medical sociology and related fields has largely not been
incorporated into the body of literature
on self-management. Gaps also exist in the
exchange of knowledge and information
between research, policy, and practice domains. For example, while there is mixed
evidence on the effectiveness6,12,13 of the
Stanford Chronic Disease Self-management
Program,14 it remains the dominant policy
approach being implemented in many
Author references
1. British Columbia Centre of Excellence for Women’s Health, Vancouver, British Columbia, Canada
2. Public Health Agency of Canada, Ottawa, Ontario, Canada
Correspondence: Sue Mills, BC Centre of Excellence for Women’s Health, E311 – 4500 Oak Street, Box 48, Vancouver BC V6H 3N1; Tel.: (604) 875-2633; Fax: (604) 875-3716;
Email: smills@cw.bc.ca
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
176
provinces in Canada.9 There is also increasing concern that mainstream approaches to
SMS may be meeting the needs of certain
subgroups of the CC population, namely
largely white, well-educated persons,
to the exclusion of other disadvantaged
groups and that this may be increasing
inequities.9,15-23
These challenges in SMS have been discussed
at international seminars and conferences
over the past few years.24-26 However, there
remained a well-recognized need to convene
a meeting dedicated to better understanding
these issues and gaps and to use expert
opinion and knowledge to develop a collective vision of how to address these
challenges. As a result, an international
roundtable on the SMS of CCs was held in
Vancouver in June 2009.
International roundtable
and consultation
The British Columbia Centre of Excellence
for Women’s Health hosted a three-day
international roundtable on the SMS of
CCs, entitled “‘Minding the Gap’: Building
a Frame-work to Bridge Evidence, Policy,
and Practice in Self-Management Support
for People with Chronic Conditions.” The
roundtable, with Canada playing a leadership role, brought together international
and interdisciplinary expertise in self-management from among leading researchers,
policy makers, health care professionals and
consumers from Australia, New Zealand,
the United Kingdom and the United States
as well as Canada. The 23 participants
explored major initiatives in the current
SMS field, identified key stakeholder perspectives and needs, analyzed strengths and
opportunities and began developing a vision
for advancing the field. The three-day
process saw important differences in perspectives as well as divergent opinions and
tensions between individuals, disciplines,
sectors and countries; these high-lighted the
challenges and opportunities of collaborative initiatives involving multiple countries
and stakeholders at different levels. The
self-administrated survey responses of 12
expert informants who were not present
at the roundtable (including two health
professionals working in Canada’s First
Nations communities) added further opinions to the exciting debates.
The roundtable achieved its goal of furthering an interdisciplinary and intersectoral
understanding of SMS and created a collaborative space for advancing SMS research,
policy and practice. The participants were
able to articulate a list of key values, principles, strategic directions and actions for
addressing major gaps; these recommendations were summarized in a proceedings
report.27 The participants agreed that ongoing collaboration across sectors and disciplines and within and among countries was
essential to disseminate evidence-based practices and evidence-informed policy. In order
to continue the collaboration process initiated at the meeting, participants developed
a plan to create an “SMS community of
practice.” The Canadian Institutes of Health
Research (CIHR), which co-funded the
roundtable, awarded a grant in January 2010
to further advance the development of the
framework and community of practice.
Forwarding the field: international SMS framework development
After the meeting, transcripts were compiled
and analyzed using qualitative methods (thematic analysis) and the findings were used
in the framework development process28 to
create Building Bridges: An International
Framework for Chronic Condition SelfManagement Support (“CCSMS framework”).
This draft framework was sent out for two
reviews among the roundtable participants
in April and September 2010 using a
modified Delphi e-consultation process29
(using a web-based survey created using
SurveyMonkey) resulting in an 82% and
80% response rate, respectively. In December
2010, the framework was released via an
adapted e-survey to more than 400 individuals and organizations in the SMS
field for broad international review. In
total, over 203 reviewers from 16 countries reviewed and gave their feedback on
the draft framework: 194 completed the
e-survey, and 9 gave detailed responses
through email. The final framework
will be broadly disseminated in the late fall
of 2011. In order to strengthen the potential utility and impact of the framework
177
over the long term, supplementary documents may be developed; these will focus
on evidence to support the identified
strategic directions, implementation approaches in different contexts, and tools to
facilitate knowledge translation between
re-search, policy and practice.
The purpose of the draft framework is to
help stakeholders in a variety of sectors influence policy, practice and research related
to SMS for CCs. The framework identifies
eight principles and seven strategic directions to guide those working to develop SMS
capacities at the local, regional and national
level. It also identifies sample strategies that
suggest different ways of addressing each
key area, recognizing that specific strategies
must be developed in response to the needs,
res-ources and systems in specific contexts.
Conclusion
As a result of its key involvement in the
CCSMS framework, Canada is situated as a
leader in building bridges, facilitating the
development of a collective vision that can
improve SMS. The collaborative process of
developing the framework that began in
Vancouver in 2009 has been instrumental in
creating an international SMS community
of practice that can continue to exchange
knowledge and experience across countries
and embark on mutually beneficial projects
that aim to improve the health of CC populations and reduce inequities. As evidenced
by the positive survey responses to date, the
draft CCSMS framework is already acting
as an important catalyst for expanding and
strengthening research, policy and practice
networks and knowledge translation capacities both in Canada and abroad.
Acknowledgements
A large number of individuals and funders
contributed to the overall success of the international roundtable. The authors wish to
thank the members of the roundtable steering committee, including Professor Richard
Osborne (co-chair), Dr. Teresa Brady and
Professor Anne Rogers as well as Ms.
Myriam Laberge, facilitator; Ms. Lisa May,
writer; Ms. Anna Liwander, research assistant; and staff of the British Columbia
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
Centre of Excellence for Women’s Health.
The authors would also like to thank the
following for their support in the ongoing
framework development process: Dr. Peter
Sargious, Dr. Teresa Brady, Dr. Shabnam
Ziabakhsh, Ms. Nancy Poole, Ms. Janaki
Jayanthan, Ms. Gemma Hunting and Ms.
Tasnim Nathoo. The authors are grateful
to Ms. Janaki Jayanthan and Ms. Anna
Liwander for their assistance in editing this
manuscript. The Roundtable was made
possible through the financial support
of the Canadian Institutes of Health
Research, the University of Victoria, the
University of New South Wales Centre for
Primary Health Care and Equity, the
Women’s Health Research Network, the
Heart and Stroke Foundation of BC & Yukon,
the British Columbia Lung Association,
the Canadian Partnership Against Cancer,
Astra-Zeneca Canada Inc. and Merck Frosst
Canada Ltd. The roundtable also received
in-kind support from the BC Centre of
Excellence for Women’s Health, the NEXUS
and ICEBERGS (Interdisciplinary Capacity
Enhancement: Bridging Excellence in
Respiratory Disease and Gender Studies)
research groups at the University of British
Columbia, the British Columbia Medical
Association, the Healthy Heart Society,
IMPACTBC, and the Disability Resource
Network.
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Ducruet T, Nault D, Bradley C. Economic
benefits of self-management education in
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Wagner EH. Chronic disease management:
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Washington (DC): National Academy Press;
2003.
Mills S, Brady TJ, Sargious P, Ziabakhsh S,
Jayanthan J. Building bridges: an international framework for promoting self-management support in the care of chronic conditions. Vancouver (BC): The Chronic Conditions
Self-Management Support (CCSMS) Framework and Community of Practice Project
Team; Forthcoming 2011.
14. Lorig K, Holman HR, Sobel D, Laurent
D, González V, Minor M, et al. Living
a healthy life with chronic conditions,
Canadian edition, 3rd ed. For ongoing physical and mental health conditions. Boulder
(CO): Bull Publishing Company 2007.
15. Foster M, Kendall E, Dickson P, Chaboyer
W, Hunter B, Gee T. Participation and
chronic disease self-management: are we
risking inequitable resource allocation?
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16. Rogers A, Kennedy A, Nelson E, Robinson
A. Uncovering the limits of patient-centeredness: implementing a self-management
trial for chronic illness. Qual Health Res.
2005;15(2):224-39.
17. Anderson JM. Speaking of illness: issues of
first generation Canadian women–implications for patient education and counseling.
Patient Educ Couns. 1998;33(3):197-207.
Paterson B, Kealey L, MacKinnon R, McGibbon
C, Van den Hoonaard D, LaChapelle D. Chronic
diseases self-management practice in Canada:
patterns, trends and programs; 2009.
18.Blustein J, Valentine M, Mead H,
Regenstein M. Race/Ethnicity and patient
confidence to self-manage cardiovascular
disease. Med Care. 2008;46(9):924-9.
10. McGowan P. The chronic disease self-management program in British Columbia. In:
Dorland J, McColl MA, editors. Emerging
approaches to chronic disease management
in primary health care. Montreal (QC):
McGill-Queen’s University Press; 2006. p.
79-90.
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approach. 2007 [cited 2009 September
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J, Griffiths CJ. Self-management education
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Syst Rev. 2007(4):CD005108.
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20. Lindsay S. How and why the motivation
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179
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
Book review
Concepts of Epidemiology: Integrating the Ideas, Theories,
Principles and Methods of Epidemiology
N.-T. Dinh, PhD (c), University of Ottawa, Ottawa, Ontario, Canada
Authors: Raj Bhopal
Publisher: Oxford University Press, Inc., New York
Publication date: 2008
Number of pages: 417
Format: Softcover
Price: $55.95
ISBN: 978-0-199-54314-4
Disappointed with the texts used to teach
introductory epidemiology to postgraduate
students, Bhopal published his own book
based on a review of 25 introductory texts
in 2002.1 In that well-received first edition,
Bhopal explained the underpinning concepts of epidemiology using plain language
and illustrative examples; he further aimed
to reinforce understanding by including
practice questions and answers at the end
of each chapter.
The primary aim of this second edition
was to improve upon the first in several
areas. In contrast to the first edition, the
author has expanded the question and answer sections and further simplified the language to accommodate those students
whose main language is not English. He has
also added introductions to particular fields,
including genetic epidemiology and the purpose of reviews (narrative, systematic and
meta-analysis).
As with the first edition, this 417-page second
edition is divided into 10 chapters designed
to be taught in 10-day introductory course at
the postgraduate level. As a whole, the book
explains the key concepts in epidemiology
well and provides a background to a broader
conceptual framework. At the start, we are
introduced to the idea that the underlying
premise of epidemiology asks us to consider
why some people in a population are healthier than others; through an examination of
the myriad determinants of health, practitioners in multiple disciplines can put into
practice what they know in order to improve
the health of populations. Here the book
would benefit from a population health
framework diagram to show the different
levels of factors that contribute to population
health. An example of such a framework is
the CIHR-IPPH Conceptual Framework of
Population Health.2
The section on relative risk, odds ratios and
attributable risk is well explained so that the
reader can clearly understand the concepts
of each measure and be able to calculate
them accurately. The sample questions provide reinforcement of the concepts and their
applications. Students will also find useful
the glossary of terms although some important epidemiological terms, including “reliability” and “validity,” are missing.
For the most part, the material presented in
the text is valid and well summarized and
reported on. There are certain concepts, however, that require more accurate explanation.
For example, Bhopal refers to “the epidemiological concept of sex [as] also a mix of biological and social” (p.9); it is more accurate
to describe “sex” as the biological concept
and “gender” as the social one. Similarly, he
does not distinguish between “race” and “ethnicity.” In some parts of the book, concepts
are introduced too generally, such as the
overview of study designs in table format,
which seems out of place. This may confuse
students since overview tables are generally
more useful after a detailed explanation.
Further, the relationship between variables
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
180
and outcomes could have been more clearly
explained using diagrams.
The section “How to keep your supervisor
happy; or 9 tips on research writing” (p. 345)
seems out of place being as it is in the chapter “Epidemiological study design and principles of data analysis.” The section is headed
“Appendix 2,” which makes one think that it
was intended for the back of the book, where
it would be better placed. Also at the back of
the book is the section on historical landmarks in epidemiology, which is traditionally placed at the beginning of epidemiology
texts. The account of John Snow and the
infamous Broad Street pump, for example,
which resulted in his concluding that cholera
was water-borne and not the result of “miasma,” is buried so far in the back of the book
that it risks being overlooked altogether.
The discussion regarding population homogeneity and heterogeneity in the exploration
of causes of disease (p.24) is quite strong,
as is the section on research ethics. The
social determinants of health are well described, particularly the discussion on income
gradients and impact of societal factors on
health. The concept of Rose’s “causes of
causes,” which is not often discussed in
introductory texts, is well explained and useful in the discussion of the determinants of
health and complexity in the study of population health. Also, the section on genetic
epidemiology is clearly written, making use
of good examples to illustrate some of the
more difficult concepts.
Overall, the book uses language suitable
for students with an intermediate level
of English. It contributes to other works
on the subject, especially the conceptual
frameworks and theories that are the basis
of epidemiology and many of the analytical approaches to which health researchers
sometimes do not give enough consideration. Although there are some sections that
could be im-proved upon, in general this
second edition of Concepts of Epidemiology
is one of the more comprehensive and
effective texts for teaching introductory
epidemiology to graduate students.
References
1. Bhopal R. Which book? A comparative
review of 25 introductory epidemiology textbooks. J Epidemiol Community Health. 1997;
51(6):612-22.
2.
Etches V, Frank J, Di Ruggiero E, Manuel M.
Measuring population health: a review of
indicators. Annu Rev Public Health. 2006;27:
29-55.
181
Vol 31, No 4, September 2011 – Chronic Diseases and Injuries in Canada
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Chronic Diseases and
Injuries in Canada
Volume 31 · Number 4 · September 2011
Inside this issue
141 Screen-based sedentary behaviours among a nationally
representative sample of youth: are Canadian kids
couch potatoes?
S. T. Leatherdale, R. Ahmed
147 Priority issues in occupational cancer research:
Ontario stake-holder perspective
K. Hohenadel, E. Pichora, L. Marrett, D. Bukvic, J. Brown, S. A Harris,
P. A. Demers, A. Blair
152 A review of screening mammography participation
and utilization in Canada
G. P. Doyle, D. Major, C. Chu, A. Stankiewicz, M. L. Harrison, L. Pogany,
V. M. Mai, J. Onysko
157 The prevalence of chronic pain and pain-related interference
in the Canadian population from 1994 to 2008
M. L. Reitsma, J. E. Tranmer, D. M. Buchanan, E. G. Vandenkerkhof
165 Can we use medical examiners’ records for suicide
surveillance and prevention research in Nova Scotia?
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