Behavioural change in Prader-Willi syndrome during COVID-19 pandemic.
J Wieting, C Eberlein, S Bleich and 2 others
PMID 33754414WHAT IT FOUND
Caregivers reported that lockdown restrictions worsened Prader-Willi syndrome behaviours.
Temper outbursts, irritability, anxiety and food-seeking increased in roughly half of the group. Individuals living in specialist care facilities showed significantly less increase in irritability and food-seeking than those living at home.
Key findings
01Caregivers reported an increase in temper outbursts in 51.7% of individuals, irritability in 55.0%, and conflicts with others in 46.1% during the pandemic restrictions.
02Individuals living in specialist care facilities had a significantly lower increase in irritability (32.0% vs 78.6%) and food-seeking behaviour (24.0% vs 57.1%) compared to those living with families.
03Free-text responses indicated that cancellations of therapy, sports, and leisure activities were common reasons for the reported restrictions in care and daytime activity.
STILL TO COME
How it was doneWhat they foundWhat it means for PTsWhat it means for OTsWhat it means for SLPs
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What it does not show
The study relied on retrospective caregiver reports using a non-standardised five-point Likert scale rather than validated psychometric instruments. There were no baseline data collected before the pandemic, making it difficult to objectively measure change over time. The sample was limited to Germany and recruited via a specific association mailing list, which may introduce selection bias. The group living in specialist facilities was significantly older (mean age 30.8 years) than the group living with families (mean age 20.8 years), although logistic regression did not find age to be a significant predictor. Caregivers of individuals in specialist facilities may have had less daily contact with the individuals, potentially reducing the accuracy of their behavioural assessments.
Declared interests
The authors declare no conflicts of interest. The project was supported by the PRACTIS Clinician Scientist Program of Hannover Medical School, funded by the German Research Foundation.
The easy way to misread this
Do not interpret the higher behavioural stability in specialist care facilities as evidence that institutionalisation is superior. The groups differed significantly in age, and the study lacked baseline measures, so the findings may reflect developmental differences or caregiver reporting biases rather than the efficacy of the care setting.