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Information preferences about treatment options in diffuse cutaneous systemic sclerosis: A Delphi consensus study.

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Summary

Patients with diffuse cutaneous systemic sclerosis (dcSSc) identified essential treatment information, including benefits like improved quality of life and harms such as increased cancer risk. This guides patient decision-making and leaflet development.

Keywords:
Delphi methodSystemic sclerosishealth communicationinformation provisionpatient educationscleroderma

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Area of Science:

  • Rheumatology
  • Dermatology
  • Patient-centered care

Background:

  • Diffuse cutaneous systemic sclerosis (dcSSc) is a severe autoimmune disease requiring informed treatment decisions.
  • Patients need clear information on treatment benefits and harms to actively participate in their care.

Purpose of the Study:

  • To identify and prioritize essential information for patients with dcSSc when making treatment decisions.
  • To understand patient preferences for information on treatment options.
  • To guide the development of patient-friendly educational materials.

Main Methods:

  • A three-round Delphi study involving patients with dcSSc.
  • Systematic literature review on benefits and harms of key dcSSc treatments.
  • Consensus-building through questionnaires and an online discussion.

Main Results:

  • Consensus was reached on seven essential benefits: prolonged progression-free survival, improved quality of life, daily functioning, pulmonary function, skin thickness, mobility, and reduced fatigue.
  • Consensus was also reached on four essential harms: treatment-related mortality, infections, cardiac damage, and increased cancer risk.
  • A leaflet design was developed based on patient input.

Conclusions:

  • Key information regarding treatment benefits and harms in dcSSc has been identified.
  • These findings are crucial for developing effective patient information resources.
  • Empowering patients with this information supports shared decision-making in dcSSc management.