ArticleMusculoskeletal care2022
Mapping the complex everyday challenges and needs of people with rheumatic disease and their surroundings using a multi-actor approach.
Article in Musculoskeletal care, 2022. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 6 papers.
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Who cites it
6 citing papers in PubMed, 6 citations in OpenAlex.
- Molding the Pain into Porcelain: The Silent Resilience of Arthritic Hands in Hong Kong's Ceramic Studios.Healthcare (Basel, Switzerland) · 2026Article
- Constructing the program theory: an implementation science approach to understanding a successful interdisciplinary team-based model of rheumatology care.Implementation science communications · 2026Article
- A Scoping Review on Artificial Intelligence-Supported Interventions for Nonpharmacologic Management of Chronic Rheumatic Diseases.Arthritis care & research · 2026Article
- The patient journey in rheumatic and musculoskeletal diseases: a systematic review.EULAR rheumatology open · 2025Article
- The broad range of self-management strategies that people with rheumatic and musculoskeletal conditions apply: an online survey using a citizen science approach.Rheumatology international · 2025Article
- Mapping the complex everyday challenges and needs of people with rheumatic disease and their surroundings using a multi-actor approach.Musculoskeletal care · 2022Article
Corrections and comments
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Authors and funding
6 authors at 2 institutions in 1 country.
Funding
No grant is acknowledged in the PubMed record.
Abstract
introductionThis study aimed to gain insight into the real-world complexity of the challenges experienced by patients, their significant others, care professionals and the work and education environment concerning rheumatic diseases as well as the interrelation between these challenges; it also aimed to prioritise the identified challenges.
methodUsing the Dialog Model, 21 people with various rheumatic diseases, 24 care professionals, 9 significant others, and 3 education and work representatives were asked about rheumatic disease-related challenges and needs in a series of focus groups and interviews. Data were inductively coded and analysed, resulting in a mind map thematically displaying the challenges. The mind map was translated into a survey, and respondents (N = 1802) prioritised themes and challenges.
resultsOf the six identified themes, 'physical complaints' was prioritised the most, followed by 'collaboration in healthcare', 'social and mental wellbeing', 'self-management', 'information and options in healthcare' and 'work and education'. Challenges of people with rheumatic diseases appeared to be complexly interrelated. For instance, fatigue and pain affect everyday functioning, but can also heavily impact social and mental wellbeing. To facilitate support for these challenges, which many patients desire, patients and care professionals said that better collaboration between primary and secondary care professionals is needed. Additionally, patients felt that their experiential expertise deserves more acknowledgement from care professionals. Results were similar across different rheumatic diseases.
conclusionMany patients desire more support to manage life with their disease. To facilitate this, collaboration and communication between healthcare professionals, and between healthcare professionals and individual patients, should be improved.
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Registered trials
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