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https://repository.monashhealth.org/monashhealthjspui/handle/1/46238| Title: | Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study. | Authors: | Mackay J.;Nixon G.M. ;Lafferty A.R.;Ambler G.;Kapur N.;Bergman P.B.;Schofield C.;Seton C.;Tai A.;Tham E.;Vora K.;Crock P.;Verge C.;Musthaffa Y.;Blecher G.;Caudri D.;Leonard H.;Jacoby P.;Wilson A.;Choong C.S.;Downs J. | Monash Health Department(s): | Endocrinology Paediatric - Respiratory and Sleep (Melbourne Children's Sleep Centre) |
Institution: | (Nixon) Melbourne Children's Sleep Centre, Monash Children's Hospital, Clayton, VIC, Australia (Bergman) Department of Paediatric Endocrinology & Diabetes, Monash Children's Hospital, Clayton, VIC, Australia (Mackay, Schofield, Caudri, Leonard, Jacoby, Wilson, Choong, Downs) Telethon Kids Institute, The Centre for Child Health Research, The University of Western Australia, PO Box 855, West Perth, WA 6872, Australia (Mackay) School of Medicine, The University of Western Australia, Crawley, WA, Australia (Nixon, Bergman) Department of Paediatrics, Monash University, Clayton, VIC, Australia (Lafferty) Paediatric Endocrinology and Diabetes Service, Department of Paediatrics, Canberra Hospital, Garran, Australia (Lafferty) Paediatric and Child Health, ANU Medical School, Canberra, ACT, Australia (Ambler) The Sydney Children's Hospitals Network, Westmead, NSW, Australia (Ambler) Discipline of Child and Adolescent Health, The University of Sydney, Camperdown, NSW, Australia (Kapur) Respiratory and Sleep Medicine, Queensland Children's Hospital, South Brisbane, QLD, Australia (Kapur) School of Clinical Medicine, University of Queensland, Brisbane, QLD, Australia (Seton) Department of Sleep Medicine, Children's Hospital Westmead, Westmead, NSW, Australia (Seton) Woolcock Institute of Medical Research, Sydney University, Camperdown, NSW, Australia (Tai) Respiratory and Sleep Department, Women's and Children's Hospital, North Adelaide, SA, Australia (Tham) Endocrinology and Diabetes Department, Women's and Children's Hospital, North Adelaide, SA, Australia (Vora, Crock) Department of Paediatric Endocrinology and Diabetes, John Hunter Children's Hospital, Newcastle, NSW, Australia (Vora) School of Medicine and Public Health, University of Newcastle, Newcastle, NSW, Australia (Crock) Hunter Medical Research Institute, Newcastle, NSW, Australia (Crock) The Priority Research Centre GrowUpWell, Newcastle, NSW, Australia (Verge) Department of Endocrinology, Sydney Children's Hospital, Randwick, NSW, Australia (Verge) School of Women's and Children's Health, The University of New South Wales, Sydney, NSW, Australia (Musthaffa) Department of Endocrinology and Diabetes, Queensland Children's Hospital, South Brisbane, QLD, Australia (Musthaffa) Department of Paediatrics, Logan Hospital, Brisbane, QLD, Australia (Musthaffa) School of Clinical Medicine, Faculty of Medicine, The University of Queensland, Brisbane, QLD, Australia (Blecher) Department of Sleep Medicine, Sydney Children's Hospital, Randwick, NSW, Australia (Caudri, Wilson) Discipline of Paediatrics, School of Medicine, The University of Western Australia, Crawley, WA, Australia (Caudri) Department of Paediatric Pulmonology, Erasmus MC - Sophia Children's Hospital, Rotterdam, Netherlands (Wilson) Respiratory and Sleep Medicine, Perth Children's Hospital, Nedlands, WA, Australia (Wilson, Downs) Curtin School of Allied Health, Curtin University, Perth, WA, Australia (Choong) Department of Endocrinology, Perth Children's Hospital, Nedlands, WA, Australia (Mackay) Royal Perth Hospital, Perth, WA, Australia |
Issue Date: | 10-Sep-2021 | Copyright year: | 2021 | Publisher: | Springer | Place of publication: | United States | Publication information: | Journal of Autism and Developmental Disorders. (no pagination), 2021. Date of Publication: 2021. | Journal: | Journal of Autism and Developmental Disorders | 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.Copyright © 2021, The Author(s), under exclusive licence to Springer Science+Business Media, LLC, part of Springer Nature. | DOI: | http://monash.idm.oclc.org/login?url=http://dx.doi.org/10.1007/s10803-021-05265-5 | PubMed URL: | 34498151 [http://www.ncbi.nlm.nih.gov/pubmed/?term=34498151] | URI: | https://repository.monashhealth.org/monashhealthjspui/handle/1/46238 | Type: | Article | Subjects: | breathing disorder caregiver central sleep apnea syndrome depression hyperphagia physical well-being Prader Willi syndrome problem behavior psychological well-being school endogenous compound growth hormone |
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