Patient perspectives on educational needs in scleroderma-interstitial lung disease.

Area of Science:

• Rheumatology
• Pulmonology
• Patient Education

Background:

• Systemic sclerosis is a rare, chronic connective tissue disease affecting multiple organs, including the lungs (interstitial lung disease).
• Significant gaps in patient education for systemic sclerosis-interstitial lung disease negatively impact patient health and quality of life.
• Identifying patient knowledge gaps is crucial for developing effective educational interventions and research.

Purpose of the Study:

• To identify priority knowledge gaps in patients with systemic sclerosis-interstitial lung disease.
• To inform the development of targeted educational interventions and future research directions.
• To enhance patient understanding and self-management of systemic sclerosis-interstitial lung disease.

Main Methods:

• Utilized the nominal group technique with 21 patients diagnosed with systemic sclerosis-interstitial lung disease.
• Conducted four structured group sessions involving two key questions to elicit knowledge gaps.
• Employed thematic analysis to categorize and rank patient-identified knowledge gaps.

Main Results:

• Top patient concerns included understanding disease progression, its bodily impacts, and health management (39.7% and 41.3%).
• Patients also prioritized anticipating future symptoms, coping strategies (19.8%), and non-pharmacological interventions (17.5%).
• Navigating health system barriers (16.7%) and understanding research efforts (10.3%) were also significant knowledge gaps.

Conclusions:

• Patient-centered education must address multifaceted concerns regarding disease management and psychosocial impacts.
• Improving patient education can empower individuals with systemic sclerosis-interstitial lung disease through enhanced support.
• Addressing identified knowledge gaps is essential for improving the overall well-being of patients.