Six month impact of false positives in an Australian infant hearing

Six month impact of false positives in an Australian infant hearing
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ORIGINAL ARTICLE
Six month impact of false positives in an Australian infant
hearing screening programme
Z Poulakis, M Barker, M Wake
.............................................................................................................................
Arch Dis Child 2003;88:20–24
See end of article for
authors’ affiliations
.......................
Correspondence to:
Dr M Barker, Centre for
Community Child Health,
Royal Children’s Hospital,
Flemington Road, Parkville,
Victoria 3052, Australia;
[email protected]
cryptic.rch.unimelb.eu.au
Accepted 5 August 2002
.......................
I
Aims: To assess short and longer term parent reported impacts of false positive referrals in the Victorian Infant Hearing Screening Program (VIHSP).
Methods: Mailed retrospective case-control survey of infants consecutively referred to VIHSP between
December 1998 and April 1999 for whom audiology did not confirm permanent hearing loss, comprising 137 infants screened with a neonatal risk factor questionnaire and 148 older infants screened
with two consecutive behavioural (distraction) tests. The two control groups comprised non-referred
screened infants matched by domicile, age, and gender. Main outcome measures were parent
reported emotions experienced before and after child’s audiology test, parent estimated impact of
hearing loss, the Child Vulnerability Scale, audiology assessment satisfaction questionnaire, and questions relating to their child’s hearing and language development.
Results: Final sample: at risk cases (AR) 108 (79% response), at risk controls 64 (51%); distraction test
cases (DT) 103 (70%), distraction test controls 53 (41%). Parents across all groups believed that hearing loss would have major effects on a child’s language (91–96%), schooling (81–91%), and employment opportunities (67–75%). Before audiology, 71% (AR) and 72% (DT) of case parents were
anxious/worried, falling to 4% and 15% afterwards. After the test 82% (AR) and 79% (DT) reported
relief, but 19% and 18% continued to feel worried. Ongoing concerns about hearing, language,
development, and general health were comparable for AR cases compared to controls, and for DT
cases compared to controls.
Conclusions: Hearing screening tests are generally well received. Parents are realistic about the
impact of childhood hearing loss and report a range of negative emotions when a false positive hearing screen requires referral. Although most are reassured by a normal test, a substantial number report
continuing concern.
nfant hearing screening, in both targeted and universal
programmes, is now a widely accepted method for the early
detection of hearing loss. As with any population based programme, benefits of screening should outweigh potential
harms.1 The prevalence of the target condition (significant
bilateral hearing loss very early in life) is low, and thus the
positive predictive value of hearing screens is generally also
low. While some have reported positive predictive values as
high as 17% or more,2 the recent US Preventive Task Force systematic review reported values ranging from just 2.2% to
11.7%.3 In other words, the great majority of babies with
“failed” screens have normal hearing.
This high false positive rate has led a number of authors to
raise the issue of potential negative impacts of hearing
screening.4–6 Studies of programmes screening for other medical disorders indicate that false positive test results cause substantial parental concern and anxiety7–10 which may last for
months or years.11–13 Studies that have directly assessed the
negative effects of hearing screening programmes are to date
inconsistent.14 15 The recently released US Preventive Task
Force systematic review of the literature on universal newborn
hearing screening (UNHS) concluded that the current
evidence of clinically important harms remains insufficient.16
It appears that positive (“refer”) screens do engender at
least transient negative emotions in a proportion of parents.17
Most studies, however, indicate that the immediate concern
and distress engendered in parents by false positive tests is
minor, and acceptance of hearing screening is high.18–20 Other
studies have reported equivalent levels of stress or anxiety in
mothers whose infants receive a refer result when compared
to those who receive a pass result,21 or to controls not receiving
neonatal hearing testing at all.19
www.archdischild.com
There is little information about longer term impacts of
false positive screens. Clemens, Davis, and Bailey (2000)
surveyed 49 mothers whose infants had “failed” an initial
automated ABR screen in a two stage UNHS programme.
Twelve per cent of those mothers surveyed a number of
months after UNHS (mean 4.9, range 2–13) reported lasting
“mild anxiety” even after their child passed second stage
screening.22 The Wessex study’s universal hearing screening
programme did not lead to increased maternal state or trait
anxiety or more negative attitudes towards the baby 2–10
months after a screen “refer” result, compared to mothers
whose babies passed the screen.23 However, it did not report on
ongoing parent concern about hearing, language, or development, or more specific residual anxieties than can be
measured with the Spielberger State-Trait Anxiety Inventory.
In this case-control study, we report on psychological and
social impacts of false positive hearing screens approximately
six months after the diagnostic audiology test in otherwise
healthy infants. We hypothesised that parent reported anxiety
and other negative emotions prior to diagnostic audiology
would largely resolve following a diagnostic audiology test
result that did not confirm permanent hearing impairment.
We also hypothesised that parents would not view their child
as more vulnerable to hearing, language, or general health
problems several months later, and that most parents would
be aware of the likely impacts of significant hearing loss for a
child.
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Abbreviations: AR, at risk; DT, distraction test; MCH, maternal and
child health; UNHS, universal newborn hearing screening; VIHSP,
Victorian Infant Hearing Screening Program
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Impact of false positive hearing screens
Table 1
21
Risk factors for which referral for ABR testing recommended by VIHSP*
Risk factors included in this study:
1. Family history of congenital hearing impairment
2. Exchange transfusion or serum bilirubin level greater than 350 µmol/l
3. Minor congenital abnormalities of the head and neck
4. Parental concern
Risk factors excluded from this study because of high risk of ongoing health/developmental problems:
5. Rubella, cytomegalovirus, or toxoplasmosis during pregnancy or other perinatal infections
6. Birth asphyxia as defined by an Apgar score of less than 4 at five minutes of age
7. Birth weight below 1500 g
8. Major congenital abnormalities of the head and neck
9. Later risk factors, e.g. bacterial meningitis, developmental delay
*Based on Joint Committee on Infant Hearing 1994 position statement.
METHODS
Setting
The birth rate in the state of Victoria, Australia, is
approximately 60 000 per annum, with approximately 110
children diagnosed with permanent hearing loss managed
with hearing aids from each annual birth cohort.24 A universal
two tier infant screening programme, the Victorian Infant
Hearing Screening Program (VIHSP), has been operating
since late 1992. All newborn infants are screened by their
maternal and child health (MCH) nurse using a written questionnaire to screen for the presence of one or more of eight risk
factors for hearing loss (table 1). If any risk factor is present,
infants are referred for diagnostic audiological evaluation as
soon as possible after birth. Five per cent of each annual birth
cohort (approximately 3000 infants) are referred for assessment via this pathway. At 7–9 months, all infants who have
not already had formal audiological testing are again screened
by their MCH nurse with a behavioural screening test based
on the Ewing distraction test; a further 5% of the birth cohort
is referred for diagnostic audiological evaluation following
two failed behavioural screens. The great majority of referred
infants do not have hearing loss.24
Design
This project was a retrospective community based case-control
survey. It was approved by the Ethics in Human Research
Committee at the Royal Children’s Hospital, Victoria, Australia.
Cases
Subjects were selected from all infants referred to VIHSP
between December 1998 and April 1999 whose subsequent
audiological assessment indicated that permanent hearing
loss was not present. Of the 691 referral forms with complete
data received in that period, 368 (53%) were referrals for at
risk infants and 251 (47%) were for infants failing a
distraction test screen twice. Sample sizes of approximately
150 were randomly selected to be able to detect a 5% mean
difference in scores between groups with alpha set at 0.05 and
power of 0.90.
We wished to focus on the impact of a false positive hearing
test in otherwise healthy children. Therefore, infants with a
risk factor that considerably increased the likelihood of ongoing health or developmental problems were excluded (see
table 1). A total of 137 (37%) of the at risk referrals met inclusion criteria and comprised the at risk case group.
Of the 251 referrals for children who failed the distraction
test screen twice, we randomly selected 148, including equal
numbers of children with conductive loss and normal hearing,
to comprise the distraction test case group.
Controls
Every child in Victoria is allocated to a single MCH nurse
serving a small geographical area (approximately 100–150
births per year per nurse) based on street address. Each case
child’s MCH nurse was asked to select a control infant by
matching the child from her centre closest to the case group
infant on age and sex. The additional criterion for inclusion
into the at risk control group was that the infant did not have a
risk factor for hearing loss. The additional criterion for inclusion into the distraction test control group was that the infant had
not failed two distraction test screens.
Questionnaire packages were mailed by the researchers to
the parents of all children in two case groups in August 1999,
with reminder letters at six and 12 weeks. Parents of control
children were sent the study package (and reminders where
appropriate) by the MCH nurse who notified the study group
when questionaries were sent. The identity of the controls was
concealed to the study group.
Measures
All questionnaires contained sections eliciting information on
the infant’s hearing history/results, family demographics, parents’ thoughts about their child’s health and development,
and estimated impact of childhood hearing loss. The
questionnaires sent to the case groups contained additional
sections assessing parents’ experience of the time before and
after their child’s audiology assessment and their evaluation of
the hearing screening and/or audiology assessment process.
Emotions felt by parents at the time leading up to and
immediately after their child’s audiology test were assessed
using 10 questions based on the 1997 study of de Uzcategui
and Yoshinaga-Itano.17 Each item was scored on a three point
scale (“not at all”, “a little”, “a lot”).
Parents’ perceptions about their child’s general susceptibility to ill health were assessed using the validated Child
Vulnerability Scale.25 Higher total scores reflect increased perceived vulnerability to general ill health, with a total cut off
score of 10 used to indicate high vulnerability. We added four
questions about parents’ perceptions of their child’s current
hearing and language development (“I have to call my child
several times before he/she responds”, “My child’s hearing
doesn’t seem as good as other children”, “I worry about my
child’s overall development compared to other children”, and
“I worry about my child’s language compared to other
children”). All items were scored on a four point scale
(“strongly agree”, “agree”, “disagree”, “strongly disagree”).
Parents were also asked “How worried are you now about your
child’s hearing?” (“not at all”, “a little”, or “a lot”).
Parents’ thoughts regarding the likely impact of childhood
hearing loss on a number of child and family outcomes were
assessed using a 13 item questionnaire developed for the
study. Child variables were language, schooling, intelligence,
ability to make friends, and employment opportunities. Family related variables were family activities or outings, seeing
friends or relatives, confidence in being a parent, relationships, health (including stress), parent employment opportunities, parent income and earnings, and time spent with the
deaf child. Parents estimated the impact hearing loss would
have on each area by rating each item on a four point scale
(“no effect”, “small effect”, “medium effect”, “big effect”).
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22
Poulakis, Barker, Wake
In both case groups, most negative emotions resolved and
most parents reported feeling relieved after their child’s
definitive hearing test. More parents in the distraction test
case group reported negative emotions after their child’s
definitive hearing test than parents of children in the at risk
case group (table 3).
Table 2 Audiology assessments and results for case
children (n=212)
Normal result on first assessment
Transient hearing loss
Not sure of result
More testing needed to make final diagnosis
Attended a second appointment
Attended a third appointment
Attended a fourth or fifth appointment
162 (76%)
28 (13%)
2 (1%)
20 (9%)
72 (34%)
32 (15%)
11 (5%)
Parents evaluated the hearing screening and diagnostic
assessment process using the MOS-9, a widely used nine item
satisfaction scale.
Data were stored and analysed using Microsoft Access 97
and SPSS.26
RESULTS
The sample
Questionnaires were returned for 108 (79%) of the children in
the at risk case group, and 103 (70%) in the distraction test
case group. On average, 5.4 (SE 0.14) months had elapsed
between definitive test results and questionnaire completion
for at risk cases, and 6.0 (SE 0.17) months for distraction test
cases. The study group received notification from MCH nurses
that 126 of a possible 137 (92%) questionnaires had actually
been sent to at risk control children, and that 129 of a possible
148 (87%) questionnaires had been sent to distraction test
control children. We received 64 (51% of the target) questionnaires back from the at risk control group and 53 (41%) from
the distraction test control group. Demographic information
did not differ significantly between the four groups; parents
completing the questionnaires were generally well educated
(40% tertiary education), born in Australia (82%), and gained
income from full time employment (87%).
Table 2 shows parent reported outcomes of audiology
assessments for the 212 case children. Of the entire group of
children in the study, 22 (7%) were referred to an ear, nose,
and throat surgeon, and of these, 13 had tympanostomy tubes.
Emotions before and after testing
Table 3 shows the retrospectively reported emotions experienced by parents during the period after their child’s identification of risk/failed screen, but before their attendance for
definitive audiology compared to the emotions reported after
definitive audiology testing.
Table 3
Concerns six months after testing
Nineteen percent of case parents were still “a little” worried
about their child’s hearing at the time of completing the questionnaire, which was on average 5.6 months (SE 0.21) after
receiving a normal hearing result. There were no differences in
the proportions of parents of at risk or distraction test cases
who were still worried about their child’s hearing (19% versus
18%, χ2 = 0.9, p = 0.45). However, of those parents in the distraction test case group who were still worried about their
child’s hearing, 78% had children with demonstrated conductive losses (mainly mild).
Parent perceptions of their child’s hearing, language, and
general development did not differ between cases and controls
in either the at risk or distraction test groups. Mean Child Vulnerability Scale scores were similar across the four groups
(F = 0.5, p = 0.70), as were the proportions of children whose
Child Vulnerability Scale score was above the cut off of 10
(χ2 = 4.3, p = 0.23).
Parent perceived impact of hearing loss
Many parents thought hearing loss, if present, would have
“medium” or “big” impacts for a child and his/her family;
these beliefs were almost identical across the four groups and
were therefore combined. Overall, 93% of parents thought that
a child’s language would be affected, followed by schooling
(88%), employment opportunities (72%), ability to make
friends (59%), and intelligence (34%). Perceived medium to
large family impacts were also frequent; 55% thought a deaf
child would require more of their time, 49% believed a child’s
hearing loss would increase parent stress, 43% believed it
would alter their own employment opportunities, 42% income
and earnings, and 40% their confidence in being a parent.
Perceptions of testing
Parents of children in the at risk case group were more satisfied overall with the audiology testing process than parents of
children in the distraction test case group (mean = 1.8 (SD
0.6) versus 2.0 (SD 0.8); t = 4.9, p < 0.01). Only 6% of at risk
parents and 6% of distraction test parents rated the audiological assessment as “somewhat difficult/unpleasant”. However,
28% of distraction test case parents rated the distraction test
Emotions reported by parents of at risk and distraction test cases before and after diagnostic audiology
Between group comparisons: at risk
versus distraction test case groups
Within group comparisons: before versus after diagnostic audiology
% at risk (n=108)
% distraction test (n=104)
Emotion
Before
After
p*
Before
After
p*
Before
p†
Angry
Sad/depressed
Powerless/helpless
Impatient
Shocked
Relieved
Upset
Anxious/worried
Stressed
Guilty
Confused
1
13
24
25
9
n/a
9
71
29
7
7
0
0
0
2
n/a
82
0
4
1
0
0
1.0
<0.001
<0.001
<0.001
–
–
<0.01
<0.001
<0.001
0.02
<0.01
9
20
26
32
28
n/a
28
72
25
9
23
6
4
11
4
n/a
79
9
15
7
3
9
0.45
<0.001
<0.01
<0.001
–
–
<0.001
<0.001
<0.001
0.03
<0.01
0.01‡
0.20
0.72
0.23
0.05
–
<0.001
0.81
0.54
0.71
<0.01
n/a, not asked.
*McNemar test; †χ2 test; ‡Fisher’s exact test used when one cell expected value less than 5.
Valid percentage figures are reported throughout. All variables dichotomised into “not at all” versus “a little” and “a lot” combined.
www.archdischild.com
After
p†
<0.01‡
0.05†
<0.001
0.44‡
–
0.71
<0.01‡
<0.01
0.03‡
0.11‡
<0.01‡
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Impact of false positive hearing screens
process as either “fair” or “poor” compared to just 10% of controls (χ2 = 6.7, p = 0.01).
DISCUSSION
This retrospective case-control study investigated parent
reported emotions after false positive results on two types of
hearing screen (newborn risk factor questionnaire and 7–9
month distraction test) approximately six months after diagnostic audiology testing. As predicted, these parents of
children without permanent hearing loss were very aware of
the impact such a loss might have on a range of child and
family functioning domains, regardless of their case or control
status.
Consistent with other research,17 anxiety and worry were
frequently reported before definitive audiology testing,
suggesting the immediate impacts of positive screens are
negative emotions. However, as hypothesised, most parents in
both groups reported feeling relieved after diagnostic audiology, and negative emotions largely resolved.22
The screening and audiology assessments were generally
well received by all groups, with parents of the distraction test
case group being slightly less satisfied. This may be related to
how audiology practices prioritise waiting lists, with younger
infants (that is, newborns with a risk factor for hearing
impairment) tending to be seen sooner, while older infants
may wait longer for diagnostic assessment. Paradoxically, parents of the distraction test case children may feel their child
has already “failed” two hearing tests (the distraction
screens), and therefore perceive the urgency and importance
of the diagnostic assessment to be paramount, especially
when a significant number of these babies do have conductive
hearing loss. Moreover, parents of distraction test cases tended
to report negative emotions after definitive audiology testing
more frequently than did parents of at risk cases.
A substantial proportion of parents across both case groups
(19%) were still “a little” worried about their child’s hearing
approximately six months after receiving a normal result from
definitive audiology testing. In the distraction test group, most
of these cases were children with ongoing conductive hearing
problems. However, this was not the case in the at risk group.
We were not able to determine whether this continuing
concern reflected development of conductive losses or heightened concern because of awareness of a risk factor even in the
presence of a normal audiology result. However, parent
reported concerns about language and general development
and perceived vulnerability to ill health did not differ among
the four groups in this study.
To our knowledge, this is only the second controlled study
to investigate longer term concerns about hearing in parents
of children who have been referred for diagnostic audiology
via a screening process, and where diagnostic results indicate
a normal result. It adds to the findings from the Wessex
study23 by focusing on potential lasting concerns relating to
children’s hearing, including language, development, and
health, rather than on the more general constructs of overall
maternal anxiety and positive/negative attitudes towards the
child. The inclusion of two control groups matched on age and
sex with which to compare the two case groups strengthens
this study’s findings.
Limitations include the rather low response rate for
children in the two control groups. However, this did not
detract from those comparisons (the majority) which focused
on the case groups only. Retrospective collection of data,
resulting in several months having elapsed between the
screening and diagnostic process data collection, could have
resulted in biased recall and an underestimation of the negative emotions experienced at the time. However, this did not
apply to the longer term outcomes of particular interest to this
study.
23
Finally, the condition of interest in this study (permanent
hearing loss) has a low prevalence in the population (0.2%),24
and therefore the positive predictive value of screening tests is
also low.3 It is possible that parents would be reporting greater
levels of concern for conditions where positive results on
screening tests are more predictive of the presence of the target condition. Low levels of concern, however, were clearly not
related to lack of knowledge about the condition’s likely
impact.
Hearing screening programmes are generally well accepted
and result in few negative emotional reactions. Some parent
anxiety is unavoidable; a certain level of anxiety may even
motivate parents to attend diagnostic testing. Staff who are
involved with hearing screening programmes should be aware
of the emotions likely to be experienced by parents whose
children do not pass the hearing screen, and that these emotions are not all immediately and completely alleviated by a
normal result at diagnostic testing. However, we can also be
reassured that these negative emotions do not appear to
translate to long term concerns about hearing, language,
development, and general health, even when parents are well
aware of the likely impacts of deafness on a young child.
ACKNOWLEDGEMENTS
We would like to thank all the parents, infants, and maternal and
child health nurses who participated in this study. We are also very
grateful to Dr Shirley Russ, Alice Kuo, Kim Uyeda, and Melissa
Graham for their assistance in design and data collection. Funding for
this study was provided by the Centre for Community Child Health,
Royal Children’s Hospital, Victoria, Australia.
.....................
Authors’ affiliations
Z Poulakis, M Barker, M Wake, Centre for Community Child Health,
Royal Children’s Hospital, Victoria, Australia
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ARCHIVIST ........................................................................................................
Choosing deafness
Dialectes Have you heard, Archivistes, that a couple in America wanted, and arranged to have, a deaf
child?1
Archivistes Why and how did they do that?
Dialectes Well, they are a lesbian couple who are both deaf and they wanted children through donor
insemination. As sperm donor they chose a deaf friend who could trace deafness back through five generations of his family. Their first child, a girl born 5 years ago, is deaf and now they have a boy who also
is deaf.
Archivistes As so often, Dialectes, you have explained how but not why.
Dialectes They wanted their children to be deaf like themselves.
Archivistes It must surely be wrong to impose a handicap on an unborn child.
Dialectes They argue that the harm that results from being deaf is socially imposed.2 The deaf are a minority group who are discriminated against as are girls and black people. Nobody thinks it wrong to want a
girl or a black baby.
Archivistes But the deaf can’t hear.
Dialectes Quite so, Archivistes.
Archivistes How can it be argued that being unable to hear is desirable?
Dialectes Deaf people have to suffer the unthinking prejudices of hearing people that deny them opportunities that could be opened to them. They may find comfort in their own deaf community and some, it
seems, believe that membership of this community is so rewarding that their children should also be
members even though the condition of membership is lack of hearing.
Archivistes Are all the disadvantages of deafness socially imposed?
Dialectes Many are, but not all. Being unable to hear music, birdsong, a baby crying, a car horn, or a fire
alarm are not social impositions. Of course we should do as much as possible to minimise the disadvantages but it seems unlikely that they can be eliminated.
Archivistes When does an impairment become a disadvantage?
Dialectes When it prevents the impaired person doing what she or he wants to do.
Archivistes Would it be justified to select for impairment if parents and others believed that the impairment
would not be a disadvantage?
Dialectes You have not listened carefully, Archivistes. I am the only one who can decide what I want to do.
To select for impairment is to deprive the child of choice; it is an infringement of liberty. It is unlikely that
a child would choose to have no choice.
Archivistes Many people with handicaps lead rewarding, successful, and apparently happy lives, Dialectes.
Dialectes That is true, but acknowledging it and admiring such people is a far cry from wanting a child to
be born impaired. That is something we should not wish for.
References
m
1 Spriggs M. Lesbian couple create a child who is deaf like them. J Med Ethics 2002;28:283.
m
2 Anstey KW. Are attempts to have impaired children justifiable? J Med Ethics 2002;28:286–8.
www.archdischild.com
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Six month impact of false positives in an
Australian infant hearing screening programme
Z Poulakis, M Barker and M Wake
Arch Dis Child 2003 88: 20-24
doi: 10.1136/adc.88.1.20
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