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

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Associations Between Hyperphagia, Symptoms of Sleep Breathing Disorder, Behaviour Difficulties and Caregiver Well-Being in Prader-Willi Syndrome: A Preliminary Study
Journal of Autism and Developmental Disorders ( IF 4.345 ) Pub Date : 2021-09-08 , DOI: 10.1007/s10803-021-05265-5
Jessica Mackay _{1,

2,

3} , Gillian M Nixon _{4,

5} , Antony R Lafferty _{6,

7} , Geoff Ambler _{8,

9} , Nitin Kapur _{10,

11} , Philip B Bergman _{5,

12} , Cara Schofield ₁ , Chris Seton _{13,

14} , Andrew Tai ₁₅ , Elaine Tham ₁₆ , Komal Vora _{17,

18} , Patricia Crock _{17,

19,

20} , Charles Verge _{21,

22} , Yassmin Musthaffa _{23,

24,

25} , Greg Blecher ₂₆ , Daan Caudri _{1,

27,

28} , Helen Leonard ₁ , Peter Jacoby ₁ , Andrew Wilson _{1,

27,

29,

30} , Catherine S Choong _{1,

31} , Jenny Downs _{1,

30}

Affiliation

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.
Melbourne Children's Sleep Centre, Monash Children's Hospital, Clayton, Victoria, Australia.
Department of Paediatrics, Monash University, Clayton, Victoria, Australia.
Paediatric Endocrinology and Diabetes Service, Department of Paediatrics, Canberra Hospital, Garran, Australia.
Paediatric and Child Health, ANU Medical School, Canberra ACT, Australia.
The Sydney Children's Hospitals Network, Westmead, NSW, Australia.
Discipline of Child and Adolescent Health, The University of Sydney, Camperdown, NSW, Australia.
Respiratory and Sleep Medicine, Queensland Children's Hospital, South Brisbane, Queensland, Australia.
School of Clinical Medicine, University of Queensland, Brisbane, Queensland, Australia.
Department of Paediatric Endocrinology & Diabetes, Monash Children's Hospital, Clayton, Victoria, Australia.
Department of Sleep Medicine, Children's Hospital Westmead, Westmead, NSW, Australia.
Woolcock Institute of Medical Research, Sydney University, Camperdown, NSW, Australia.
Respiratory and Sleep Department, Women's and Children's Hospital, North Adelaide, SA, Australia.
Endocrinology and Diabetes Department, Women's and Children's Hospital, North Adelaide, SA, Australia.
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.
Hunter Medical Research Institute, Newcastle, NSW, Australia.
The Priority Research Centre GrowUpWell®, Newcastle, NSW, Australia.
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.
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.
Department of Sleep Medicine, Sydney Children's Hospital, Randwick, NSW, 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.
Respiratory and Sleep Medicine, Perth Children's Hospital, Nedlands, WA, Australia.
Curtin School of Allied Health, Curtin University, Perth, WA, Australia.
Department of Endocrinology, Perth Children's Hospital, Nedlands, WA, Australia.

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.

中文翻译：

Prader-Willi 综合征中摄食过多、睡眠呼吸障碍症状、行为困难和照顾者幸福感之间的关联：一项初步研究

Prader-Willi 综合征 (PWS) 是一种罕见的遗传性疾病，其特征是神经发育迟缓、食欲过盛、社交交流困难和具有挑战性的行为。个人需要看护者的密切监督，这可能会对看护者的生活质量产生负面影响。本研究使用在澳大利亚 PWS 登记处收集的数据（n = 50，平均年龄 11.2 岁）来评估儿童行为与照顾者心理健康之间的关联。与睡眠相关的呼吸障碍、儿童抑郁和社交困难的症状与较差的照顾者身心健康有关。生长激素疗法的使用与更好的照顾者身心健康有关。

更新日期：2021-09-09

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