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; Heraganahally, Subash S.

doi:10.1016/j.nbscr.2022.100075

Cited by 9 publications

(7 citation statements)

References 45 publications

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“…As such, it is plausible that the current study captured anywhere from 40% to 60% of current Indigenous COPD patients in the TEHS region. More recently, several aspects of respiratory health issues among Indigenous Australians from the TEHS region of the NT has been reported in the literature 19–24 28 32 35–40 52–66. Hence, this study could be considered as an important further step forward67 in addressing COPD disease awareness and knowledge in an Indigenous population.…”

Section: Discussionmentioning

confidence: 76%

COPD disease knowledge, self-awareness and reasons for hospital presentations among a predominately Indigenous Australian cohort: a study to explore preventable hospitalisation

et al. 2022

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BackgroundThe prevalence of chronic obstructive pulmonary disease (COPD) is higher among Indigenous Australians than that of non-Indigenous Australians. However, no studies have investigated COPD disease awareness and knowledge among Indigenous Australians. In this study, we assessed the COPD disease awareness among Indigenous and non-Indigenous patients in the Top End Health Service region of the Northern Territory of Australia.MethodsOf a total convenience sample of 100 adults, 86 patients consented to participate in this study over a 15-month period. A structured interview was conducted to identify participant’s level of knowledge about COPD, medications, self-management, healthcare interaction and utilisations.ResultsMost (69%) participants were Indigenous and men (52%). Indigenous patients were significantly younger (mean 56 vs 68 years p<0.001), with a higher proportion of remote residence and current smoking. COPD knowledge across the cohort was low, with 68% of Indigenous and 19% of non-Indigenous participants reporting they ‘know nothing/had never heard of COPD’. Most patients self-reported use of puffers/inhalers and were able to identify medication used; however, adherence to therapy was observed in only 18%. Shortness of breath was the most common symptom for hospital presentation (83%) and 69% of Indigenous patients reported seeking medical attention during an exacerbation. Self-management and COPD action plans were poorly implemented. A significant proportion (49%) reported ≥2 hospital admissions in the preceding 12 months. During exacerbation, although the majority of Indigenous patients were transferred to a tertiary centre from remote communities, patient’s preference was to be managed in their respective local communities.ConclusionsAwareness and understanding of COPD are low in this cohort on several domains. Tailored and culturally appropriate initiatives for both patients and health professionals alike are required to improve COPD disease management among Indigenous population. This will not only improve quality of life but also reduce recurrent hospitalisation, healthcare cost and utilisation.

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Section: Discussionmentioning

confidence: 76%

COPD disease knowledge, self-awareness and reasons for hospital presentations among a predominately Indigenous Australian cohort: a study to explore preventable hospitalisation

et al. 2022

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Section: Resultsmentioning

confidence: 99%

“…Nine of the included reports used a qualitative component or approach [ 30 , 60 , 64 , 73 , 78 , 90 , 102 – 105 ], with all but one [ 64 ] being part of a mixed methods study. Five reported using mixed methods, qualitative methods, or interviews but did not specify further the specific methodology used [ 60 , 72 , 78 , 102 , 103 ]. Of the remaining reports, one was a study protocol and described the plan to use phenomenological and collaborative storytelling to explore lived experience of injury-related disability [ 90 ].…”

Section: Resultsmentioning

confidence: 99%

Preference-based measures of health-related quality of life in Indigenous people: a systematic review

Roy,

Neill,

Swampy

et al. 2023

Qual Life Res

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Purpose In many countries, there are calls to address health inequalities experienced by Indigenous people. Preference-based measures (PBMs) provide a measurement of health-related quality of life and can support resource allocation decisions. This review aimed to identify, summarize, and appraise the literature reporting the use and performance of PBMs with Indigenous people. Methods Eleven major databases were searched from inception to August 31, 2022. Records in English that (1) assessed any measurement property of PBMs, (2) directly elicited health preferences, (3) reported the development or translation of PBMs for Indigenous people, or (4) measured health-related quality of life (HRQL) using PBMs were included. Ethically engaged research with Indigenous people was considered as an element of methodological quality. Data was synthesized descriptively (PROSPERO ID: CRD42020205239). Results Of 3139 records identified, 81 were eligible, describing psychometric evaluation (n = 4), preference elicitation (n = 4), development (n = 4), translation (n = 2), and HRQL measurement (n = 71). 31 reported ethically engaged research. Reports originated primarily from Australia (n = 38), New Zealand (n = 20), USA (n = 9) and Canada (n = 6). Nearly all (n = 73) reported indirect, multi-attribute PBMs, the most common of which was the EQ-5D (n = 50). Conclusion A large number of recent publications from diverse disciplines report the use of PBMs with Indigenous people, despite little evidence on measurement properties in these populations. Understanding the measurement properties of PBMs with Indigenous people is important to better understand how these measures might, or might not, be used in policy and resource decisions affecting Indigenous people. (Funding: EuroQoL Research Foundation).

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“… 56 Finally, individuals with ataxia may have an increased risk of sleep disordered breathing that may necessitate regular surveillance and intervention as indicated. 57 , 58 …”

Section: Multidisciplinary Management Of Ataxiamentioning

confidence: 99%

“…56 Finally, individuals with ataxia may have an increased risk of sleep disordered breathing that may necessitate regular surveillance and intervention as indicated. 57,58 It seems likely that the expanding diversity in phenotypes of known CAs will continue. Similarly, new cerebellar diseases and genes will be discovered.…”

Section: Multidisciplinary Management Of Ataxiamentioning

confidence: 99%

Overview of the Clinical Approach to Individuals With Cerebellar Ataxia and Neuropathy

et al. 2022

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Increasingly, cerebellar syndromes are recognized as affecting multiple systems. Extracerebellar features include peripheral neuropathies affecting proprioception; cranial neuropathies such as auditory and vestibular; and neuronopathies, for example, dorsal root and vestibular. The presence of such features, which in and of themselves may cause ataxia, likely contribute to key disabilities such as gait instability and falls. Based on the evolving available literature and experience, we outline a clinical approach to the diagnosis of adult-onset ataxia where a combination of cerebellar and peripheral or cranial nerve pathology exists. Objective diagnostic modalities including electrophysiology, oculomotor, and vestibular function testing are invaluable in accurately defining an individual's phenotype. Advances in MRI techniques have led to an increased recognition of disease-specific patterns of cerebellar pathology, including those conditions where neuronopathies may be involved. Depending on availability, a stepwise approach to genetic testing is suggested. This is guided by factors such as pattern of inheritance and age at disease onset, and genetic testing may range from specific genetic panels through to whole-exome and whole-genome sequencing. Management is best performed with the involvement of a multidisciplinary team, aiming at minimization of complications such as falls and aspiration pneumonia and maximizing functional status.

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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

Cited by 9 publications

References 45 publications

COPD disease knowledge, self-awareness and reasons for hospital presentations among a predominately Indigenous Australian cohort: a study to explore preventable hospitalisation

COPD disease knowledge, self-awareness and reasons for hospital presentations among a predominately Indigenous Australian cohort: a study to explore preventable hospitalisation

Preference-based measures of health-related quality of life in Indigenous people: a systematic review

Overview of the Clinical Approach to Individuals With Cerebellar Ataxia and Neuropathy

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