Learmonth Yvonne C, Assunta Hunter, Skeffington Petra, Diana Walker, Kermode Allan G, Marck Claudia H
Discipline of Exercise Science, Murdoch University, Perth, WA, Australia; Centre for Molecular Medicine and Innovative Therapeutics, and Centre for Healthy Ageing, Murdoch University, WA, Australia; Perron Institute for Neurological and Translational Science, Perth, WA, Australia.
Disability and Health Unit, Melbourne School of Population and Global Health, University of Melbourne, VIC, Australia.
Mult Scler Relat Disord. 2023 Mar;71:104531. doi: 10.1016/j.msard.2023.104531. Epub 2023 Jan 24.
In 2019 and 2020, over 17 million hectares of Australia burned, and half of the Australian population was affected by toxic bushfire smoke. Then in 2020, restrictions designed to curtail the spread of COVID-19 resulted in significant changes to healthcare access. There is no Australian emergency management standard for persons with disabilities, including those with multiple sclerosis (MS). Persons with MS often require multidisciplinary and complex care, with continuity of treatment essential to prevent disease progression.
To identify limitations in access to healthcare from the perspective of persons with MS as well as MS care providers during recent crises and make recommendations for policy to improve MS healthcare access during a crisis.
In mid-2020, we undertook online surveys and interviews with persons with MS, their carers, healthcare professionals and staff of MS service providers (i.e., care providers). We used descriptive analysis for quantitative, and a general inductive approach for qualitative data.
One-hundred and thirteen persons with MS and a total of 63 MS care providers, who were close carers, healthcare professionals and service providers provided survey responses. For participants with MS, limited access to general practitioners and medical tests were of the most significant concern during the bushfires and the pandemic. In contrast, during the pandemic accessing physiotherapy was another top concern. Twenty-nine people participated in in-depth interviews, revealing that reduced healthcare access during the bushfire and the pandemic caused concern. The use of telehealth received both positive and negative reviews. All participants indicated a need for preparation and planning for healthcare access before a crisis. Persons with MS recommended centralised information sources, prioritised access to healthcare and increased levels of MS nurses and other allied healthcare. Care providers recommended centralised information sources, more nursing and mental health care access, and increased opportunities for multidisciplinary telehealth delivery.
We recommend the involvement of the MS community in creating and designing disaster preparation plans, which should cater to a range of disaster types, to improve disaster preparedness in a community that is vulnerable to increasingly common community crises.
2019年和2020年，澳大利亚超过1700万公顷土地被烧毁，一半澳大利亚人口受到有毒丛林大火烟雾的影响。随后在2020年，旨在遏制新冠病毒传播的限制措施导致医疗保健获取情况发生重大变化。澳大利亚没有针对残疾人（包括多发性硬化症患者）的应急管理标准。多发性硬化症患者通常需要多学科的复杂护理，治疗的连续性对于预防疾病进展至关重要。
从多发性硬化症患者以及多发性硬化症护理提供者的角度识别近期危机期间医疗保健获取方面的限制，并为改善危机期间多发性硬化症医疗保健获取情况的政策提出建议。
2020年年中，我们对多发性硬化症患者、他们的护理人员、医疗保健专业人员以及多发性硬化症服务提供者（即护理提供者）的工作人员进行了在线调查和访谈。我们对定量数据采用描述性分析，对定性数据采用一般归纳法。
113名多发性硬化症患者以及总共63名多发性硬化症护理提供者（包括亲密护理人员、医疗保健专业人员和服务提供者）提供了调查回复。对于多发性硬化症患者参与者来说，在丛林大火和疫情期间，获得全科医生服务和进行医学检查的机会有限是最令人担忧的问题。相比之下，在疫情期间，获得物理治疗是另一个最令人担忧的问题。29人参与了深入访谈，结果显示在丛林大火和疫情期间医疗保健获取机会减少令人担忧。远程医疗的使用既有正面评价也有负面评价。所有参与者都表示需要在危机发生前为医疗保健获取做好准备和规划。多发性硬化症患者建议提供集中的信息来源、优先获得医疗保健的机会以及增加多发性硬化症护士和其他相关医疗保健人员的数量。护理提供者建议提供集中的信息来源、增加获得护理和心理健康护理的机会，以及增加多学科远程医疗服务的机会。
我们建议让多发性硬化症群体参与制定和设计灾难准备计划，该计划应适用于一系列灾难类型，以提高易受日益常见的社区危机影响的社区的灾难准备水平。
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