False Positive Results in Screening Tests: Experiences of Parents of Children Screened for Congenital Hypothyroidism

Abstract

In The Netherlands more than 99% of newborn babies (around 170000 per annum) undergo a blood test screening for congenital hypothyroidism (combined with a test for phenylketonuria). In 1982 around 1000 children were referred to a paediatrician after a positive screening result which was later shown to be false. In this study 31 parents of children suspected (falsely) of having congenital hypothyroidism were interviewed about their experiences. The survey showed that the suspicion of thyroid deficiency was a great strain on parents; this adversely affected the parent-child relationship. The communication and information processes between medical staff and parents were often unsatisfactory. Even after the news that congenital hypothyroidism was not present some of the parents were still bothered by questions and insecurities.