Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient's perspective
Publication year
2020Source
Rheumatology, 59, 8, (2020), pp. 2052-2061ISSN
Publication type
Article / Letter to editor

Display more detailsDisplay less details
Organization
Rheumatology
Journal title
Rheumatology
Volume
vol. 59
Issue
iss. 8
Page start
p. 2052
Page end
p. 2061
Subject
Radboudumc 5: Inflammatory diseases RIHS: Radboud Institute for Health SciencesAbstract
OBJECTIVES: To examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT). METHODS: A qualitative semi-structured interview study was done in patients before or after HSCT, or patients who chose another treatment than HSCT. Thematic analysis was used. Shared decision-making (SDM) was assessed with the 9-item Shared Decision Making Questionnaire (SDM-Q-9). RESULTS: Twenty-five patients [16 male/nine female, median age 47 (range 27-68) years] were interviewed: five pre-HSCT, 16 post-HSCT and four following other treatment. Whereas the SDM-Q-9 showed the decision-making process was perceived as shared [median score 81/100 (range 49-100)], we learned from the interviews that the decision was predominantly made by the rheumatologist, and patients were often steered towards a treatment option. Strong guidance of the rheumatologist was appreciated because of a lack of accessible, reliable and SSc-specific information, due to the approach of the decision-making process of the rheumatologist, the large consequence of the decision and the trust in their doctor. Expectations of outcomes and risks also differed between patients. Furthermore, more than half of patients felt they had no choice but to go for HSCT, due to rapid deterioration of health and the perception of HSCT as 'the holy grail'. CONCLUSION: This is the first study that provides insight into the decision-making process in dcSSc. This process is negatively impacted by a lack of disease-specific education about treatment options. Additionally, we recommend exploring patients' preferences and understanding of the illness to optimally guide decision-making and to provide tailor-made information.
This item appears in the following Collection(s)
- Academic publications [227436]
- Electronic publications [107269]
- Faculty of Medical Sciences [86157]
- Open Access publications [76397]
Upload full text
Use your RU credentials (u/z-number and password) to log in with SURFconext to upload a file for processing by the repository team.