Rehabilitation priorities for individuals with Prader-Willi Syndrome

Purpose - To identify rehabilitation priorities that parents have for their children, including their adult-aged children, with Prader-Willi Syndrome (PWS) and to determine the relation between these priorities and the child's levels of adaptive behaviour functioning. Methods - Parents involved in organisations related to PWS were invited to complete an online survey. The survey listed 54 skills/behaviours (e.g. toileting, expresses wants and needs and tantrums) representing 10 adaptive functioning domains (e. g. self-care, communication and problem behaviour). Parents rated their child's current level of ability/performance with respect to each skill/behaviour and indicated the extent to which training/treatment was a priority. Results - Fifty-eight surveys were completed during the 4-month data collection period. Parents identified nine high-priority skills/behaviours from five different adaptive functioning domains. For most domains, parent priorities showed a significant linear relation to the children's adaptive behaviour deficits, in that priorities reflected areas where the child had the greatest deficits and the most problematic behaviours. Conclusion - Rehabilitation professionals should focus on the eating issues that arise in PWS and identify the adaptive functioning deficits of these individuals because such deficits are high-priority areas for parents