Allergodt Kristin, Dreyer Pia, Werlauff Ulla, Handberg Charlotte
National Rehabilitation Center for Neuromuscular Diseases, Aarhus, Denmark.
Department of Public Health, Faculty of Health, Aarhus University, Aarhus, Denmark.
Disabil Rehabil. 2025 May;47(9):2246-2257. doi: 10.1080/09638288.2024.2396063. Epub 2024 Aug 30.
To identify the existing literature on experiences of living with adult-onset myotonic dystrophy type 1 (DM1) from people with adult-onset DM1, their caregivers and health care professionals.
Following the framework of Arksey and O'Malley, a literature search was performed in five databases in October-November 2022. An updated search was conducted in December 2023. Studies were eligible if they reported on experiences related to living with DM1 from people with adult-onset DM1, caregivers or healthcare professionals. Qualitative, quantitative, and mixed method studies were included. Key findings were categorized using the International Classification of Functioning, Disability and Health (ICF) components.
11 out of 1842 studies were included, of which five had a quantitative design, five had a qualitative design and one study had a mixed methods design. The studies reported on multiple experiences of living with adult-onset DM1 from the perspectives of people with the disease and their caregivers. All components of the ICF were reported in the studies; activity and participation and personal factors were the most reported.
Adult-onset DM1 is a complex disease with great biopsychosocial impact making it challenging to live with for those diagnosed with DM1 as well as their caregivers.
从成年发病的1型强直性肌营养不良症（DM1）患者、他们的护理人员以及医疗保健专业人员中，识别关于成年发病的DM1患者生活经历的现有文献。
按照阿克西和奥马利的框架，于2022年10月至11月在五个数据库中进行了文献检索。2023年12月进行了更新检索。如果研究报告了成年发病的DM1患者、护理人员或医疗保健专业人员与DM1生活相关的经历，则这些研究符合条件。纳入了定性、定量和混合方法研究。使用国际功能、残疾和健康分类（ICF）组件对主要发现进行分类。
1842项研究中有11项被纳入，其中五项采用定量设计，五项采用定性设计，一项研究采用混合方法设计。这些研究从患者及其护理人员的角度报告了成年发病的DM1患者的多种生活经历。研究报告了ICF的所有组件；活动与参与以及个人因素的报告最多。
成年发病的DM1是一种具有重大生物心理社会影响的复杂疾病，对于被诊断患有DM1的患者及其护理人员来说，与之共存具有挑战性。
