Parental Anxiety Associated with Newborn Hearing Screening
description
Transcript of Parental Anxiety Associated with Newborn Hearing Screening
Parental Anxiety Associated with Newborn Hearing Screening
Karl R. White, PhDNational Center for Hearing Assessment and Management
Utah State University
www.infanthearing.org
0.0%
10.0%
20.0%
30.0%
40.0%
50.0%
60.0%
70.0%
80.0%
90.0%
Jan-93
Jan-94
Jan-95
Jan-96
Jan-97
Jan-98
Jan-99
Jan-00
Jan-01
Jan-02
Jan-03
Percentage of Newborns Screened Prior to Discharge
Why Is there so much concern about the possibility that newborn hearing screening may cause parental anxiety?
Statements of prominent clinicians and researchers
Evidence from other types of screening programs
Research with newborn hearing screening programs
The cost of universal screening in both monetary and emotional terms are substantial, while the “real world” benefits have, as of yet, to be determined. It is likely that some families are actually harmed emotionally due to the significant high false-postive rates. --- Luterman, 1999
Confronting parents with the news that their child did not pass the screen …even when this possibility is not born out by further testing, may have significant long-term sequelae for both parents and children. --- Clayton and Tharpe, 1997
There is much evidence from studies of other types of newborn screening that identifying a child as abnormal in the newborn period, even when that identification soon proves incorrect, can engender lasting anxiety on the part of certain parents and can have long-term adverse effects on parent-child relationships and on children’s later psychological development. --- Paradise, 1999
What do leading clinicians and researchers say?
Parental Concern Associated with Newborn Screening for Conditions other than Hearing Loss
Study Description ResultsTluczek, et. al., 1992• Cystic Fibrosis• 104 parents of false positive screens• Follow-up after 1 year
48-76% of parents reported confusion, shock or anger
Al-Jader, et. al., 1991• Cystic Fibrosis• 18 families of babies diagnosed via screening• No follow-up
61% were “severely affected”
Rothenberg & Sills, 1968• PKU• Approximately 2-4 families per month over a 2
year period• Anecdotal report
“many cases” with anxiety syndrome
Parental Concern Associated with Newborn Screening for Conditions other than Hearing Loss
(continued)
Study Description ResultsBodegard, et. al., 1982• Hypothyroidism• 102 mothers and 70 fathers of diagnosed children• Follow-up after 23-30 days
76% had “strong” emotional reaction
Fyro & Bodegard, 1987• Hypothyroidism• 32 families of “false positives”• Follow-up after 4 years
58% with anxiety
Sorenson, et. al., 1984• Inborn errors of metabolism• 60 parents whose babies needed retesting• Anecdotal report
36% worried
Parental Concern Associated with Newborn Screening for Hearing Loss
Study Description ResultsClemens, et. al., 2000• 49 of 76 mothers referred for retesting• Average age: 22 weeks• No Follow-up
14% reported anxiety
Kennedy, 1999• mothers of 100 unscreened and 100 screened
babies (50% positive and 50% negative results)• Average age: 2-12 months• No Follow-up
No statistically significant differences between the groups
Weichbold and Welzl-Mueller, 2001• 85 mothers whose babies failed initial screening• 43 mothers whose babies failed rescreening• Average age: 5 monts• No Follow-up
14% of initial screening group “worried”
21% of re-screening group “worried”
Parental Concern Associated with Newborn Screening for Hearing Loss
(continued)
Study Description ResultsStuart, et. al., 2000• 20 mothers whose babies passed the screening and
20 mothers whose babies failed the screening• Age: 38-42 weeks• No Follow-up
“Equivalent stress levels” between mothers of infants
who fail and pass
de Uzcategui and Yoshinago-Itano, 1997• 77 of 292 mothers of babies referred for rescreening• Age not reported, no Follow-up
22-37 % reported being afraid, frustrated, depressed,
angry or sadWatkin, et. al., 1998• 288 mothers of babies after initial screening and 57
mothers of babies after retest• 60 parents whose babies needed retesting• Follow-up data collected after unspecified interval
15% “fairly worried” after initial test
2% “fairly worried” after retest
Parental Concern Associated with Newborn Screening for Hearing Loss
(continued)
Study Description ResultsVohr, et. al., 1998• 157 mothers of babies after initial screening and
20 mothers of babies after retest• Age: 1 day to 4 weeks• No Follow-up
4% “worried or very worried” after initial screen
33% “worried or very worried” after re-screen
Vohr, et. al. 2001• 307 mothers of babies after initial screening and
20 mothers of babies after retest• Age: 1 day to 4 weeks• No Follow-up
4% “worried or very worried” after initial screen
17% “worried or very worried” after re-screen
Magnuson & Hergils, 1999• 49 mothers and fathers, some of whom were
screened and some of whom were not• Follow-up at 8-12 months
No differences in anxiety between mothers of screened
and unscreened babies
SummaryParental Concern Associated with
Newborn Screening for Hearing LossStudy Description Results
Clemens, et. al., 2000 9-14% reported anxiety
Kennedy, 1999 No statistically significant differences between the groups
Weichbold and Welzl-Mueller, 2001 14% of initial screening group “worried”21% of re-screening group “worried”
Stuart, et. al., 2000 “Equivalent stress levels” between mothers of infants who fail and pass
de Uzcategui and Yoshinago-Itano, 1997 22-37 % reported being afraid, frustrated, depressed, angry or sad
Watkin, et. al., 1998 15% “fairly worried” after initial test2% “fairly worried” after retest
Vohr, et. al., 1998 4% “worried or very worried” after initial screen33% “worried or very worried” after re-screen
Vohr, et. al. 2001 4% “worried or very worried” after initial screen17% “worried or very worried” after re-screen
Magnuson & Hergils, 1999 No differences in anxiety between mothers of screened and unscreened babies
Directions for Future Research
• Are parents more worried about newborn hearing screening than other conditions?– Eating and sleeping concerns– Growth and development– Other screening and health concerns
• Immediate versus long-term concerns• Comparison of parents of babies who passed
and failed screening• Inclusions of fathers
Take Home Messages• Better research is needed
• There is some evidence, that newborn screening for conditions such as cystic fibrosis can cause higher levels of parent anxiety
• There is no convincing evidence that newborn hearing screening increases parent anxiety
www.infanthearing.org
www.babyhearing.org