Specific content for education and self-management programmes for people with pulmonary fibrosis: a co-creation,...

Area of Science:

• Pulmonary Medicine
• Patient Education
• Health Psychology

Background:

• Pulmonary fibrosis (PF) significantly impacts patients' quality of life, necessitating effective patient education and self-management (PESM) strategies.
• Current PESM content may lack specificity and comprehensiveness, requiring development informed by those with lived experience and clinical expertise.

Purpose of the Study:

• To identify and establish comprehensive and specific PESM content for pulmonary fibrosis.
• To co-create this content through collaboration between people with PF and healthcare professionals (HCPs).

Main Methods:

• A sequential, multiphase mixed-method approach (qualitative → quantitative → qualitative) was utilized.
• Methods included interviews with people with PF and HCPs, and a two-round Delphi study with HCPs.
• Content validation was performed through subsequent interviews with people with PF.

Main Results:

• 319 initial items were derived from phase 1 interviews.
• 260 HCPs participated in the Delphi study, with 96 completing both rounds.
• 150 items were agreed upon, covering seven key topics: Staying well, fitness, breathlessness, cough, fatigue, anxiety/depression/panic, and oxygen therapy.

Conclusions:

• Specific, clinically relevant, and meaningful PESM content for PF was identified via a co-creation approach.
• The findings will inform current and future PESM programs, benefiting patients and clinicians.
• The study highlights specific areas for future research in PF self-management.