ArticleRheumatology (Oxford, England)2020
Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient's perspective.
Article in Rheumatology (Oxford, England), 2020. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 9 papers.
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Who cites it
9 citing papers in PubMed.
- Palliative care in systemic sclerosis: incorporating advance care planning into longitudinal care.Journal of scleroderma and related disorders · 2026Review
- Patient and caregiver perspectives of an early integrated systemic sclerosis palliative care clinic: a qualitative study.Rheumatology advances in practice · 2025Article
- Patient Assessment Chronic Illness Care (PACIC) and its associations with quality of life among Swiss patients with systemic sclerosis: a mixed methods study.Orphanet journal of rare diseases · 2023Article
- Patient preferences for the treatment of systemic sclerosis-associated interstitial lung disease: a discrete choice experiment.Rheumatology (Oxford, England) · 2022Article
- Skin involvement in early diffuse cutaneous systemic sclerosis: an unmet clinical need.Nature reviews. Rheumatology · 2022Review
- Information preferences about treatment options in diffuse cutaneous systemic sclerosis: A Delphi consensus study.Journal of scleroderma and related disorders · 2022Article
- Article
- Autologous stem-cell transplantation in systemic sclerosis-associated interstitial lung disease: early action in selected patients rather than escalation therapy for all.Therapeutic advances in musculoskeletal disease · 2021Review
- The need for a holistic approach for SSc-ILD - achievements and ambiguity in a devastating disease.Respiratory research · 2020Review
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Authors and funding
10 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
objectivesTo examine the treatment decision-making process of patients with dcSSc in the context of haematopoietic stem cell transplantation (HSCT).
methodsA 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).
resultsTwenty-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'.
conclusionThis 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.
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