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

Julia Spierings1, Femke C C van Rhijn-Brouwer1,2, Carolijn J M de Bresser1

  • 1Department of Rheumatology and Clinical Immunology, University Medical Centre Utrecht.

Rheumatology (Oxford, England)
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Patients with diffuse cutaneous Systemic Sclerosis (dcSSc) often feel steered towards treatments like haematopoietic stem cell transplantation (HSCT), despite perceiving shared decision-making. Lack of disease-specific information impacts this crucial process.

Keywords:
SScdecision-makinghaematopoietic stem cell transplantationpatient perspectivequalitative researchshared decision-making

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Area of Science:

  • Rheumatology
  • Hematology
  • Medical Decision Making

Background:

  • Diffuse cutaneous Systemic Sclerosis (dcSSc) is a severe autoimmune disease requiring complex treatment decisions.
  • Haematopoietic stem cell transplantation (HSCT) is a potential, intensive treatment option for dcSSc.
  • Understanding patient perspectives in treatment decision-making is crucial for effective care.

Purpose of the Study:

  • To investigate the treatment decision-making experiences of patients with dcSSc.
  • To explore the role of shared decision-making (SDM) in the context of HSCT for dcSSc.
  • To identify factors influencing patient choices regarding HSCT and other treatments.

Main Methods:

  • Qualitative study utilizing semi-structured interviews with 25 dcSSc patients.
  • Interviews conducted pre- or post-HSCT, or with patients choosing alternative treatments.
  • Thematic analysis and the 9-item Shared Decision Making Questionnaire (SDM-Q-9) were employed.

Main Results:

  • While SDM-Q-9 scores indicated perceived shared decision-making (median 81/100), interviews revealed rheumatologists predominantly guided choices.
  • Patients often felt steered towards HSCT, influenced by a lack of accessible, SSc-specific information and trust in their physician.
  • Over half felt compelled towards HSCT due to rapid health decline and its perception as a last resort.

Conclusions:

  • This study is the first to detail the decision-making process for dcSSc patients considering HSCT.
  • A significant lack of disease-specific patient education negatively impacts treatment decision-making.
  • Tailoring information and exploring patient preferences are recommended for optimal guidance.