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08-09-2021 | Original Paper

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

Auteurs: 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. Choong, Jenny Downs

Gepubliceerd in: Journal of Autism and Developmental Disorders | Uitgave 9/2022

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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.
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Metagegevens
Titel
Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study
Auteurs
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. Choong
Jenny Downs
Publicatiedatum
08-09-2021
Uitgeverij
Springer US
Gepubliceerd in
Journal of Autism and Developmental Disorders / Uitgave 9/2022
Print ISSN: 0162-3257
Elektronisch ISSN: 1573-3432
DOI
https://doi.org/10.1007/s10803-021-05265-5

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