Wills Olivia, Brischetto Dominique, Zoszak Karen, Allogmanny Shoroog, McMahon Anne-Therese, Haartsen Jodi, Probst Yasmine
School of Medical, Indigenous and Health Sciences, University of Wollongong, Wollongong NSW 2522, Australia.
School of Medical, Indigenous and Health Sciences, University of Wollongong, Wollongong NSW 2522, Australia.
Mult Scler Relat Disord. 2024 Dec;92:105949. doi: 10.1016/j.msard.2024.105949. Epub 2024 Oct 22.
Brain health is a global priority for multiple sclerosis (MS) care. This study aimed to establish consensus on internationally applicable lifestyle recommendations and behaviour change strategies to promote lifelong brain health for people living with MS.
A three-round, modified, e-Delphi survey was conducted. Lifestyle recommendations and behaviour change strategies were generated based on a review of the published literature, qualitative interviews, and expert feedback, respectively.
Sixty-nine experts participated, with a final response rate of 75 %. Experts were predominantly female (n = 50, 72 %), 30 to 59 years of age (n = 54, 78 %) and worked in an academic institution (n = 21, 50 %). A majority (n = 16, 80 %) of experts with lived experience had a relapsing-remitting phenotype. Starting with 15 lifestyle recommendations, we iteratively identified new recommendations and combined existing ones, achieving consensus on 17 lifestyle recommendations among experts from healthcare, academia, research and advocacy; 16 among experts with lived experience, and 14 behaviour change strategies, presented as separate frameworks.
An e-Delphi process has established lifestyle recommendations and identified behaviour change strategies to promote brain health-focussed care for MS. Reliance on these frameworks with detailed management recommendations may help to establish consistency in lifestyle behaviour management of MS, between and within healthcare systems.
脑健康是多发性硬化症（MS）护理的全球优先事项。本研究旨在就国际适用的生活方式建议和行为改变策略达成共识，以促进MS患者的终身脑健康。
开展了三轮改进的电子德尔菲调查。生活方式建议和行为改变策略分别基于对已发表文献的回顾、定性访谈和专家反馈得出。
69名专家参与，最终回复率为75%。专家主要为女性（n = 50，72%），年龄在30至59岁之间（n = 54，78%），在学术机构工作（n = 21，50%）。大多数有实际患病经历的专家（n = 16，80%）表现为复发缓解型。从15条生活方式建议开始，我们反复确定新建议并合并现有建议，在来自医疗保健、学术界、研究和宣传领域的专家中就17条生活方式建议达成共识；在有实际患病经历的专家中达成共识的有16条，以及14条行为改变策略，并分别呈现为单独的框架。
电子德尔菲流程确定了生活方式建议，并确定了行为改变策略，以促进针对MS的以脑健康为重点的护理。依靠这些带有详细管理建议的框架可能有助于在医疗保健系统之间及内部建立MS生活方式行为管理的一致性。
