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Keywords:

  • ADHD;
  • body mass index;
  • OCD;
  • Prader–Willi syndrome;
  • psychosocial support

Abstract

Aim  Prader–Willi syndrome (PWS) is a rare, genetically based disorder that occurs in about 1 of 15 000 live-born children. To raise a child with PWS is challenging for parents and requires support from multiprofessional habilitation services. This paper maps the need for psychosocial support and current management of children and adolescents with PWS.

Method  Parents to 58 children with PWS (aged 5–18 years) completed questionnaires covering clinical, diagnostic and psychosocial issues.

Results  The children received their diagnosis at a mean age of 2.5 year. Growth hormone treatment was given to 72%. Sixty-three per cent of the sample was not overweight. Neuropsychiatric symptoms were common from early age and some were related to obesity. Most parents wanted information as to availability of external resources and future child needs. Few parents needed family-directed support.

Conclusion  The overall impression is that the eating disorder is managed relatively well. Even so PWS symptoms typically exacerbate over time and consequently parents need continuous support throughout childhood and adolescence. Greater attention should be paid to idiosyncrasies in cognitive functioning and to clinical markers of neuropsychiatric problems.