Journal of autism and developmental disorders · 2021
Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study.
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Mackay Jessica, Nixon Gillian M, Lafferty Antony R, Ambler Geoff, Kapur Nitin, Bergman Philip B, Schofield Cara, Seton Chris, Tai Andrew, Tham Elaine, Vora Komal, Crock Patricia, Verge Charles, Musthaffa Yassmin, Blecher Greg, Caudri Daan, Leonard Helen, Jacoby Peter, Wilson Andrew, Choong Catherine S, Downs Jenny
Аннотация
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.