Psychological and behavioural aspects in children and adolescents with congenital hypothyroidism diagnosed by neonatal screening: comparison between parents' and children's perceptions

Abstract

Objective: To compare the psychological adjustment and behaviour of congenital hypothyroidism (CH) children and their parents with a control group. Study design: A cross-sectional study was carried out with 84 CH subjects diagnosed by neonatal screening (range 2.7-18.6 years), subdivided into four age groups: group 1 (2-5 years); group 2 (6-10 years); group 3 (11-13 years); and group 4 (14-18 years) and was compared with an age-matched control group. Patients were assessed using two questionnaires: Child Behaviour Checklist for parents and Youth Self-Report for children over 11 years of age. Results: In groups 1, 3 and 4, total score (TS), internalising score (ISZproblems within the self) and externalising score (ESZconflicts with other people) as reported by parents were not significantly different in CH patients and in controls. In group 2, parents of CH children showed values of TS (P!0.05), IS (P!0.05), ES (P!0.05) and scores on other scales significantly higher than controls. In self-reports of groups 3 and 4, the behavioural scales were not significantly different in CH patients and in controls. Conclusions: Paediatricians should be informed about the increased risk of the development of behavioural problems at primary school age in CH patients. At this age special attention should be paid to parental worries and anxiety. However, it can be reassuring for the patients and parents to know that the problems may be related to CH, and that they may spontaneously disappear.

ENDOCRINOLOGY AND ADOLESCENCE: Congenital hypothyroidism: a clinical update of long-term outcome in young adults

“…Only minor behavioral differences between patients and the reference population have been reported (34,35,36). The higher percentage of CH patients than of their healthy peers still living with parents may reflect lower patient maturity and autonomy, as reported for young adult patients with chronic conditions of childhood onset (37).…”

Self-Reported Quality of Life of Young Children With Conditions From Early Infancy: A Systematic Review

“…There was substantial variation between these studies in sample size and in the approach to data analysis and presentation. Ten studies analyzed the level of agreement between child and parent scores through correlations 11,33,40,[45][46][47][48][49][50][51] (Pearson or Spearman rank correlation or intraclass correlation coefficients), whereas 11 used other approaches in which there was no statistical analysis of self-proxy agreement reported 31,34,[52][53][54][55][56][57][58][59][60] (Table 3). Only 1 study analyzed the magnitude of the disagreement or agreement, taking into account the average SDs of the child and parent scores (effect size), the direction of self-proxy difference, and the factors affecting it.…”

Intellectual and Academic Performance of Children With Congenital Hypothyroidism in Relation to Time of Diagnosis

“…19 Various studies including a study by Nicoletta Bisacchi had shown that there is a definite risk of behavioural problems in children with congenital hypothyroidism again pointing for early diagnosis, prompt treatment and regular and systematic follow up for a better outcome in these children. 20…”