Parental Anxiety Associated with Newborn Hearing Screening

Karl R. White, PhDNational Center for Hearing Assessment and Management

Utah State University

www.infanthearing.org

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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

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