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Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective

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....

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Autores principales: Spierings, Julia, van Rhijn-Brouwer, Femke C C, de Bresser, Carolijn J M, Mosterman, Petra T M, Pieterse, Arwen H, Vonk, Madelon C, Voskuyl, Alexandre E, de Vries-Bouwstra, Jeska K, Kars, Marijke C, van Laar, Jacob M
Formato: Online Artículo Texto
Lenguaje:English
Publicado: Oxford University Press 2020
Materias:
Acceso en línea:https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7382600/
https://www.ncbi.nlm.nih.gov/pubmed/31808528
http://dx.doi.org/10.1093/rheumatology/kez579
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author Spierings, Julia
van Rhijn-Brouwer, Femke C C
de Bresser, Carolijn J M
Mosterman, Petra T M
Pieterse, Arwen H
Vonk, Madelon C
Voskuyl, Alexandre E
de Vries-Bouwstra, Jeska K
Kars, Marijke C
van Laar, Jacob M
author_facet Spierings, Julia
van Rhijn-Brouwer, Femke C C
de Bresser, Carolijn J M
Mosterman, Petra T M
Pieterse, Arwen H
Vonk, Madelon C
Voskuyl, Alexandre E
de Vries-Bouwstra, Jeska K
Kars, Marijke C
van Laar, Jacob M
author_sort Spierings, Julia
collection PubMed
description 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.
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spelling pubmed-73826002020-07-29 Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective Spierings, Julia van Rhijn-Brouwer, Femke C C de Bresser, Carolijn J M Mosterman, Petra T M Pieterse, Arwen H Vonk, Madelon C Voskuyl, Alexandre E de Vries-Bouwstra, Jeska K Kars, Marijke C van Laar, Jacob M Rheumatology (Oxford) Clinical Science 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. Oxford University Press 2020-08 2019-12-06 /pmc/articles/PMC7382600/ /pubmed/31808528 http://dx.doi.org/10.1093/rheumatology/kez579 Text en © The Author(s) 2019. Published by Oxford University Press on behalf of the British Society for Rheumatology. http://creativecommons.org/licenses/by-nc/4.0/ This is an Open Access article distributed under the terms of the Creative Commons Attribution Non-Commercial License (http://creativecommons.org/licenses/by-nc/4.0/), which permits non-commercial re-use, distribution, and reproduction in any medium, provided the original work is properly cited. For commercial re-use, please contact journals.permissions@oup.com
spellingShingle Clinical Science
Spierings, Julia
van Rhijn-Brouwer, Femke C C
de Bresser, Carolijn J M
Mosterman, Petra T M
Pieterse, Arwen H
Vonk, Madelon C
Voskuyl, Alexandre E
de Vries-Bouwstra, Jeska K
Kars, Marijke C
van Laar, Jacob M
Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective
title Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective
title_full Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective
title_fullStr Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective
title_full_unstemmed Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective
title_short Treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective
title_sort treatment decision-making in diffuse cutaneous systemic sclerosis: a patient’s perspective
topic Clinical Science
url https://www.ncbi.nlm.nih.gov/pmc/articles/PMC7382600/
https://www.ncbi.nlm.nih.gov/pubmed/31808528
http://dx.doi.org/10.1093/rheumatology/kez579
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