TY - JOUR
T1 - Treatment decision-making in diffuse cutaneous systemic sclerosis
T2 - a patient's perspective
AU - Spierings, Julia
AU - van Rhijn-Brouwer, Femke C C
AU - de Bresser, Carolijn J M
AU - Mosterman, Petra T M
AU - Pieterse, Arwen H
AU - Vonk, Madelon C
AU - Voskuyl, Alexandre E
AU - de Vries-Bouwstra, Jeska K
AU - Kars, Marijke C
AU - van Laar, Jacob M
N1 - Publisher Copyright:
© 2019 The Author(s) 2019. Published by Oxford University Press on behalf of the British Society for Rheumatology.
PY - 2020/8/1
Y1 - 2020/8/1
N2 - 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.
AB - 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.
KW - SSc
KW - decision-making
KW - haematopoietic stem cell transplantation
KW - patient perspective
KW - qualitative research
KW - shared decision-making
UR - http://www.scopus.com/inward/record.url?scp=85079895245&partnerID=8YFLogxK
U2 - 10.1093/rheumatology/kez579
DO - 10.1093/rheumatology/kez579
M3 - Article
C2 - 31808528
SN - 1462-0324
VL - 59
SP - 2052
EP - 2061
JO - Rheumatology (Oxford, England)
JF - Rheumatology (Oxford, England)
IS - 8
ER -