Sleep disorders among Aboriginal Australians with Machado-Joseph Disease: Quantitative results from a multiple methods study to assess the experience of people living with the disease and their caregivers

LaGrappe, Desireé, Massey, Libby, Kruavit, Anuk, Howarth, Timothy, Lalara, Gayangwa, Daniels, Bronwyn, Wunungmurra, Julie Gungunbuy, Flavell, Kimberley, Barker, Ruth, Flavell, Howard, and Heraganahally, Subash S. (2022) Sleep disorders among Aboriginal Australians with Machado-Joseph Disease: Quantitative results from a multiple methods study to assess the experience of people living with the disease and their caregivers. Neurobiology of Sleep and Circadian Rhythms, 12. 100075.

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Abstract

Objective: To investigate frequency and characteristics of sleep disorders and their association with health-related quality of life and psychosocial wellbeing for Aboriginal Australians living with MJD.

Methods: A convenience sample of MJD participants n = 24 participated in a semi-attended, ambulatory diagnostic sleep study to capture polysomnography, actigraphy and sleep diary data. Self-report measures collected were the Pittsburgh Sleep Quality Index (PSQI), STOP-BANG Questionnaire for Obstructive Sleep Apnoea (OSA), International Restless Legs Syndrome Study Group rating scale (IRLS), Kessler-5 (K5) and EuroQoL-5 Dimension (EQ5D). Caregivers (n = 22) reported EQ-5D, K5 and bed partners’ sleep behaviour (Mayo Sleep Questionnaire-Informant). Environmental factors were measured.

Results: We observed Nocturia, Sleep Related Leg Cramps, OSA, REM Behaviour Disorder, and RLS, respectively in 100%, 71%, 47%, 43%, and 33% of participants with a significant positive correlation between Body mass index (BMI) and Apnoea hypopnea index (AHI). The majority of sleep was spent in non-rapid eye movement sleep (NREM)-N2 stage (77.8% (67.7, 81.6)). Overcrowding (92%) and overnight care needs (42%) interrupted sleep. MJD participants and caregivers reported high psychological distress (K5 median 12.5 IQR 7, 16.5 & 8 IQR 6, 12 respectively).

Conclusion: Poor sleep quality and sleep disturbances are prevalent among this cohort. Disease manifestations and environmental factors are driving factors. Larger sample sizes are required to predict risk factors and confirm observed associations.

Item ID: 74513
Item Type: Article (Research - C1)
ISSN: 2451-9944
Keywords: Machado-Joseph disease”, “Aboriginal”, “Ataxia”, “Indigenous”, “Sleep”, “Spinocerebellar Ataxia type 3”
Copyright Information: © 2022 MJD Foundation. Published by Elsevier Inc. This is an open access article under the CC BY-NC-ND license (http://creativecommons.org/licenses/by-nc-nd/4.0/).
Date Deposited: 02 Nov 2022 03:14
FoR Codes: 45 INDIGENOUS STUDIES > 4504 Aboriginal and Torres Strait Islander health and wellbeing > 450417 Aboriginal and Torres Strait Islander public health and wellbeing @ 100%
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