Te Braake E, Schriemer R, Grünloh C, Ahoud S, Asselberghs T, Bodelier V, Hansen D, Ophuis C, Wolkorte R
Roessingh Research and Development, Enschede, The Netherlands.
Biomedical Signals and System Group, Faculty of Electrical Engineering, Mathematics, and Computer Science, University of Twente, Drienerlolaan 5, 7522 NB, Enschede, The Netherlands.
Rheumatol Int. 2025 May 6;45(5):135. doi: 10.1007/s00296-025-05842-2.
Rheumatic and musculoskeletal diseases (RMDs) cause several restrictions in daily living. Self-management is an important aspect of managing RMDs. However, little is known about the self-management strategies that are currently applied in daily life. This study aimed to identify the current self-management strategies that people with RMDs apply through a citizen science approach. An online survey was iteratively developed together with people with RMDs. The survey was distributed among people with all types of RMDs. Survey responses were collected within Qualtrics, and once anonymized, analysed using Atlas.ti. General self-management strategies and motivations to start performing a strategy were deductively coded by two reviewers, after consultations with patient partners. 250 complete surveys were collected. 91.2% of the respondents were female. 1305 self-management strategies were mentioned, and 669 elaborations were given. Most participants applied self-management strategies within the 'physical activity' category in their daily lives (e.g., walking, biking). Motivations to start performing a certain self-management strategy mostly originated from the bodily functioning dimension (e.g., reducing pain). 1275 facilitators to start a self-management strategy were mentioned, which were mostly related to the 'support' category. Barriers (N = 480) were most frequent in the 'condition-related' category. Self-management is an important aspect of managing a person's condition in daily life. People choose one or several strategies based on the challenge they are facing, depending on their feasibility and preferences in line with their personal context. The comprehensive overview of strategies informs both patients and healthcare professionals to support a personalized self-management journey.
风湿性和肌肉骨骼疾病（RMDs）给日常生活带来了诸多限制。自我管理是RMDs管理的一个重要方面。然而，对于目前在日常生活中应用的自我管理策略，我们知之甚少。本研究旨在通过公民科学方法确定RMDs患者目前应用的自我管理策略。我们与RMDs患者共同迭代开发了一项在线调查。该调查在所有类型RMDs患者中进行了分发。调查回复在Qualtrics中收集，匿名后使用Atlas.ti进行分析。在与患者合作伙伴协商后，两名评审员对一般自我管理策略和开始执行某项策略的动机进行了演绎编码。共收集到250份完整的调查问卷。91.2%的受访者为女性。共提及1305种自我管理策略，并给出了669条详细阐述。大多数参与者在日常生活中在“体育活动”类别内应用自我管理策略（如步行、骑自行车）。开始执行某项自我管理策略的动机大多源于身体功能维度（如减轻疼痛）。共提及1275个开始自我管理策略的促进因素，其中大多与“支持”类别相关。障碍（N = 480）在“疾病相关”类别中最为常见。自我管理是日常生活中管理个人疾病的一个重要方面。人们根据所面临的挑战，依据其可行性和个人背景下的偏好，选择一种或几种策略。对这些策略的全面概述有助于患者和医疗保健专业人员支持个性化的自我管理过程。
