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


Journal

Journal of autism and developmental disorders
ISSN: 1573-3432
Titre abrégé: J Autism Dev Disord
Pays: United States
ID NLM: 7904301

Informations de publication

Date de publication:
Sep 2022
Historique:
accepted: 28 08 2021
pubmed: 10 9 2021
medline: 6 8 2022
entrez: 9 9 2021
Statut: ppublish

Résumé

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.

Identifiants

pubmed: 34498151
doi: 10.1007/s10803-021-05265-5
pii: 10.1007/s10803-021-05265-5
doi:

Types de publication

Journal Article

Langues

eng

Sous-ensembles de citation

IM

Pagination

3877-3889

Informations de copyright

© 2021. The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature.

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Auteurs

Jessica Mackay (J)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia.
School of Medicine, The University of Western Australia, Crawley, WA, Australia.
Royal Perth Hospital, Perth, WA, Australia.

Gillian M Nixon (GM)

Melbourne Children's Sleep Centre, Monash Children's Hospital, Clayton, Victoria, Australia.
Department of Paediatrics, Monash University, Clayton, Victoria, Australia.

Antony R Lafferty (AR)

Paediatric Endocrinology and Diabetes Service, Department of Paediatrics, Canberra Hospital, Garran, Australia.
Paediatric and Child Health, ANU Medical School, Canberra ACT, Australia.

Geoff Ambler (G)

The Sydney Children's Hospitals Network, Westmead, NSW, Australia.
Discipline of Child and Adolescent Health, The University of Sydney, Camperdown, NSW, Australia.

Nitin Kapur (N)

Respiratory and Sleep Medicine, Queensland Children's Hospital, South Brisbane, Queensland, Australia.
School of Clinical Medicine, University of Queensland, Brisbane, Queensland, Australia.

Philip B Bergman (PB)

Department of Paediatrics, Monash University, Clayton, Victoria, Australia.
Department of Paediatric Endocrinology & Diabetes, Monash Children's Hospital, Clayton, Victoria, Australia.

Cara Schofield (C)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia.

Chris Seton (C)

Department of Sleep Medicine, Children's Hospital Westmead, Westmead, NSW, Australia.
Woolcock Institute of Medical Research, Sydney University, Camperdown, NSW, Australia.

Andrew Tai (A)

Respiratory and Sleep Department, Women's and Children's Hospital, North Adelaide, SA, Australia.

Elaine Tham (E)

Endocrinology and Diabetes Department, Women's and Children's Hospital, North Adelaide, SA, Australia.

Komal Vora (K)

Department of Paediatric Endocrinology and Diabetes, John Hunter Children's Hospital, Newcastle, NSW, Australia.
School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia.

Patricia Crock (P)

Department of Paediatric Endocrinology and Diabetes, John Hunter Children's Hospital, Newcastle, NSW, Australia.
Hunter Medical Research Institute, Newcastle, NSW, Australia.
The Priority Research Centre GrowUpWell®, Newcastle, NSW, Australia.

Charles Verge (C)

Department of Endocrinology, Sydney Children's Hospital, Randwick, NSW, Australia.
School of Women's and Children's Health, The University of New South Wales, Sydney, NSW, Australia.

Yassmin Musthaffa (Y)

Department of Endocrinology and Diabetes, Queensland Children's Hospital, South Brisbane, Queensland, Australia.
Department of Paediatrics, Logan Hospital, Brisbane, Queensland, Australia.
School of Clinical Medicine, Faculty of Medicine, The University of Queensland, Brisbane, Queensland, Australia.

Greg Blecher (G)

Department of Sleep Medicine, Sydney Children's Hospital, Randwick, NSW, Australia.

Daan Caudri (D)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia.
Discipline of Paediatrics, School of Medicine, The University of Western Australia, Crawley, WA, Australia.
Department of Paediatric Pulmonology, Erasmus MC - Sophia Children's Hospital, Rotterdam, The Netherlands.

Helen Leonard (H)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia.

Peter Jacoby (P)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia.

Andrew Wilson (A)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia.
Discipline of Paediatrics, School of Medicine, The University of Western Australia, Crawley, WA, Australia.
Respiratory and Sleep Medicine, Perth Children's Hospital, Nedlands, WA, Australia.
Curtin School of Allied Health, Curtin University, Perth, WA, Australia.

Catherine S Choong (CS)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia.
Department of Endocrinology, Perth Children's Hospital, Nedlands, WA, Australia.

Jenny Downs (J)

Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA, 6872, Australia. Jenny.Downs@telethonkids.org.au.
Curtin School of Allied Health, Curtin University, Perth, WA, Australia. Jenny.Downs@telethonkids.org.au.

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