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

Percentage of Newborns Screened Prior to Discharge

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

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

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

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 23-30 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

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”

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: 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 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

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

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

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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