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. 2025 May 6;45(5):135.
doi: 10.1007/s00296-025-05842-2.

The broad range of self-management strategies that people with rheumatic and musculoskeletal conditions apply: an online survey using a citizen science approach

E Te Braake  1   2 , R Schriemer  3   4 , C Grünloh  5   6 , S Ahoud  7 , T Asselberghs  7 , V Bodelier  7 , D Hansen  7 , C Ophuis  7 , R Wolkorte  8
Affiliations

The broad range of self-management strategies that people with rheumatic and musculoskeletal conditions apply: an online survey using a citizen science approach

E Te Braake et al. Rheumatol Int. .

Abstract

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.

Keywords: Citizen science; Rheumatic and musculoskeletal disease; Self-management; Self-management strategies; Surveys and questionnaires.

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Conflict of interest statement

Declarations. Conflict of interest: The authors have not used AI in this manuscript. All authors (EtB, RS, CG, SA, TA, VB, DH, RW) have no conflict of interest to declare. Ethical approval: All respondents received information about the study at the start of the survey. To qualify for partaking in the survey participants needed to be: (1) 16 years or older, and (2) diagnosed with a rheumatic condition. To start filling in the survey, participants needed to give their digital informed consent before participating. The nature of this study does not require formal medical ethical approval. This was assessed by the Medical Research Ethics Committee (MREC) Oost-Nederland in terms of the Medical Research Involving Human Subjects Act (WMO) obligation (File number: 2023-16440). For both the survey and the collaboration with research partners, this study received ethical approval from the Ethical Board of the University of Twente (request number 230796). All procedures were in accordance with the Declaration of Helsinki and the Good Clinical Practice (GCP) guidelines.

Figures

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Fig. 1
Roadmap of activities within the REIS project
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