Children with Prader-Willi Syndrome and COVID-19: a longitudinal study of the effect of social re-opening after the lockdown.

ABSTRACT

BACKGROUND: This study longitudinally investigated mental health indicators, body mass index (BMI), and access to school and health-care services in children with Prader-Willi syndrome (PWS) and community controls (CC) during the first wave of the COVID-19 pandemic. METHODS: The parents of 71 children (34 PWS and 37 CC) aged 6-17 years completed an online questionnaire during the initial COVID-19 lockdown (T0) and the subsequent partial (T1) and full re-opening (T2). We examined access to school and health-care services, BMI, and mental health (DSM-5 Parent/Guardian Rated Cross-Cutting Syndrome Measure) across the three time-points. For BMI and DSM-5 measure, we tested within- (Friedman's ANOVA repeated measures) and between- (robustified linear mixed-models, rLMM) group differences over time. RESULTS: Around 30% of PWS children maintained contact with medical personnel through telemedicine. PWS children kept contact with both teachers and classmates at a lower rate than CC. At all time-points, BMI was higher in PWS than CC. During partial reopening, while children with PWS had a decrease in BMI, CC showed an increase, with a significant interaction time*group interaction. Mental symptoms significantly declined in both groups, although in CC the decrease was greater than in PWS. CONCLUSIONS: PWS children were at a disadvantage during the COVID-19 outbreak for lower access to school than CC. The improvement of mental health in both groups with the reopening confirms the importance of social activities outside the family. The decrease in BMI in the PWS group indicates the positive role of caregivers' monitoring on eating habits of children.