1. Parental Anxiety Associated with Newborn Hearing Screening
Karl R. White, PhD
National Center for Hearing Assessment and Management
Utah State University

2. Percentage of Newborns Screened Prior to Discharge

3. Statements of prominent clinicians and researchers
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

4. What do leading clinicians and researchers say?
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
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

5. 48-76% of parents reported confusion, shock or anger
Parental Concern Associated with Newborn Screening for Conditions other than Hearing Loss
Study Description
Results
Tluczek, 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
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

6. 76% had “strong” emotional reaction
Parental Concern Associated with Newborn Screening for Conditions other than Hearing Loss (continued)
Study Description
Results
Bodegard, et. al., 1982
Hypothyroidism
102 mothers and 70 fathers of diagnosed children
Follow-up after days
76% had “strong” emotional reaction
Fyro & Bodegard, 1987
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

7. Parental Concern Associated with Newborn Screening for Hearing Loss
Study Description
Results
Clemens, 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 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
14% of initial screening group “worried”
21% of re-screening group “worried”

8. de Uzcategui and Yoshinago-Itano, 1997 22-37 % reported being
Parental Concern Associated with Newborn Screening for Hearing Loss (continued)
Study Description
Results
Stuart, et. al., 2000
20 mothers whose babies passed the screening and 20 mothers whose babies failed the screening
Age: 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 sad
Watkin, 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

9. 4% “worried or very worried” after initial screen
Parental Concern Associated with Newborn Screening for Hearing Loss (continued)
Study Description
Results
Vohr, 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
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

10. Summary Parental Concern Associated with Newborn Screening for Hearing Loss
Study 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 test
2% “fairly worried” after retest
Vohr, et. al., 1998
4% “worried or very worried” after initial screen
33% “worried or very worried” after re-screen
Vohr, et. al. 2001
17% “worried or very worried” after re-screen
Magnuson & Hergils, 1999
No differences in anxiety between mothers of screened and unscreened babies

11. 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

12. 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