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What do patients prefer? A multinational, longitudinal, qualitative study on patient-preferred treatment outcomes in early rheumatoid arthritis
Open accessAbstract
OBJECTIVES: To explore treatment outcomes preferred by patients with early rheumatoid arthritis (RA) and how these change throughout the early disease stage across three European countries. METHODS: A longitudinal, qualitative, multicentre study was conducted in Belgium, the Netherlands and Sweden. 80 patients with early RA were individually interviewed 3-9 months after treatment initiation and 51 of them participated again in either a focus group or an individual interview 12-21 months after treatment initiation. Data were first analysed by country, following the Qualitative Analysis Guide of Leuven (QUAGOL). Thereafter, a meta-synthesis, inspired by the principles of meta-ethnography and the QUAGOL, was performed, involving the local research teams. RESULTS: The meta-synthesis revealed 11 subthemes from which four main themes were identified: disease control, physical performance, self-accomplishment and well-being. 'A normal life despite RA' was an overarching patient-preferred outcome across countries. Belgian, Dutch and Swedish patients showed many similarities in terms of which outcomes they preferred throughout the early stage of RA. Some outcome preferences (eg, relief of fatigue and no side effects) developed differently over time across countries. CONCLUSIONS: This study on patient-preferred outcomes in early RA revealed that patients essentially want to live a normal life despite RA. Our findings help to understand what really matters to patients and provide specific insights into the early stage of RA, which should be addressed by clinicians of different disciplines from the start of treatment onwards.
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Patients value outcome categories such as improvement in psychological wellbeing, reduction of symptoms, and a decrease in the impact of the disease on daily life.
“Moreover, patients have indicated to value these outcome categories such as improvement in psychological wellbeing, reduction of symptoms, and a decrease in the impact of the disease on daily life (Carr et al., 2003; Hsiao and Fraenkel, 2017; Van der Elst et al., 2020).”
From Guided internet-based cognitive-behavioral therapy for patients with rheumatic conditions: A systematic review (2021) · cites this paper as Van der Elst et al., 2020
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Metadata
- Authors
- Van der Elst, K., Mathijssen, E. G. E., Landgren, E., Bremander, A., De Groef, A., Lindqvist, E., Nylander, M., Peters, A., Van den Hoogen, F., van Eijk-Hustings, Y., Verhoeven, G., Vriezekolk, J. E., Westhovens, R., & Larsson, I.
- Affiliations
- Department of Rheumatology, University Hospitals Leuven, Leuven, Belgium
- Sint Maartenskliniek (NL)
- Lund University (SE)
- University of Southern Denmark (DK)
- Department of Rehabilitation Sciences, KU Leuven, Leuven, Belgium
- Swedish Rheumatism Association (SE)
- Department of Rheumatology, Sint Maartenskliniek Nijmegen, Nijmegen, Netherlands
- Department of Rheumatology, Maastricht University Medical Centre, Maastricht, Netherlands
- Halmstad University (SE)
- Corresponding author
- Larsson, Ingrid
- ORCID
- Venue
- RMD Open
- Publisher
- BMJ
- Published
- 2020-09
- Volume
- 6
- Issue
- 2
- Pages
- e001339
- ISSN
- 2056-5933 (ISSN-L)
- PMC
- PMC7525256
- OpenAlex
- W3086845768
- Cited by
- 19
- References
- 45
- Citations by year
- 2026: 3 · 2025: 3 · 2024: 3 · 2023: 3 · 2022: 3 · 2021: 4
- FWCI
- 1.88
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- RMD Open (publishedVersion, cc-by-nc)
- PubMed Central (publishedVersion, cc-by-nc)
- PubMed (publishedVersion)
- University of Southern Denmark Research Portal (University of Southern Denmark) (publishedVersion, cc-by-nc)
- Lirias (submittedVersion, other-oa)
- Research Publications (Maastricht University) (submittedVersion, cc-by-nc)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
- Lund University Publications (Lund University) (submittedVersion)
- Radboud Repository (Radboud University) (submittedVersion)
- Radboud Repository (Radboud University) (submittedVersion, other-oa)
- Research Publications (Maastricht University) (submittedVersion, other-oa)
- Funders
- Bristol-Myers Squibb (Unrestricted educational grant)
- Fonds voor Wetenschappelijk Reuma Onderzoek [Fund for Scientific Research in Rheumatology] (Travel grant)
- Southern Health Care Region (REGSKANE-663961)
- The Swedish Rheumatism Association (R-849791)
- Topics
- Health Sciences › Medicine › Rheumatology › Rheumatoid Arthritis Research and Therapies
- Health Sciences › Health Professions › Physical Therapy, Sports Therapy and Rehabilitation › Musculoskeletal pain and rehabilitation
- Health Sciences › Medicine › Hematology › Autoimmune and Inflammatory Disorders Research
- Keywords
- early rheumatoid arthritis, patient preferences, disease control, physical performance, well-being, fatigue reduction, treatment side effects, quality of life, cross-national comparison
- MeSH terms
- Arthritis, Rheumatoid, Europe, Humans, Longitudinal Studies, Disease Management, Qualitative Research, Patient Preference, Public Health Surveillance, Patient Outcome Assessment
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