Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study

Jessica Mackay, Gillian M Nixon, Antony R Lafferty, Geoff Ambler, Nitin Kapur, Philip B Bergman, Cara Schofield, Chris Seton, Andrew Tai, Elaine Tham, Komal Vora, Patricia Crock, Charles Verge, Yassmin Musthaffa, Greg Blecher, Daan Caudri, Helen Leonard, Peter Jacoby, Andrew Wilson, Catherine S ChoongJenny Downs

Research output: Contribution to journalArticlepeer-review

Abstract

Prader-Willi syndrome (PWS) is a rare genetic disorder characterised by neurodevelopmental delays, hyperphagia, difficulties with social communication and challenging behaviours. Individuals require intensive supervision from caregivers which may negatively affect caregiver quality of life. This study used data collected in the Australasian PWS Registry (n = 50, mean age 11.2 years) to evaluate associations between child behaviours and caregiver mental well-being. Symptoms of sleep-related breathing disorder, child depression and social difficulties were associated with poorer caregiver mental and physical well-being. Growth hormone therapy use was associated with better caregiver mental and physical well-being. Optimising management of problematic behaviours and sleep disturbances have the potential to support caregivers who are the most vital network of support for individuals affected by PWS.

Original languageEnglish
JournalJournal of Autism and Developmental Disorders
DOIs
Publication statusE-pub ahead of print - 8 Sep 2021

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