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.