Patient perspectives on educational needs in scleroderma-interstitial lung disease

Background: Systemic sclerosis is a chronic and rare connective tissue disease with multiorgan effects, including interstitial lung disease (ILD). Navigating systemic sclerosis-interstitial lung disease presents a challenge for patients due to the gaps in patient education, which can impact patient health and quality of life. This study utilized the nominal group technique to identify priority knowledge gaps among patients with systemic sclerosis-interstitial lung disease and inform future educational interventions and research.Methods: We conducted four structured group sessions using the nominal group technique. Patients with systemic sclerosis-interstitial lung disease were presented with two questions that aimed to identify knowledge gaps. Following participant ranking, investigators performed a thematic analysis of the patients' responses to categorize the generated knowledge gaps.Results: Twenty-one patients were interviewed and ranked the top three themes for the first question (What questions about your scleroderma-lung disease that you have keep you awake at night?), based on total points, as: (1) Understanding progression, its impacts on the body, and managing health changes (39.7%); (2) anticipating future symptoms and implementing strategies for management and coping (19.8%); and (3) employing and understanding non-pharmacological interventions and self-management strategies (17.5%). The top three themes for the second question (What information do you want about your scleroderma-lung disease that you cannot find?) ranked by total points were: (1) understanding progression, its impacts on the body, and managing health changes (41.3%); (2) navigating health system barriers (16.7%); and (3) research efforts toward treating scleroderma (10.3%).Conclusions: Our study underscores the importance of understanding the educational needs of patients with systemic sclerosis-interstitial lung disease. Patient responses emphasize the need to comprehensively address concerns about disease management, coping with impacts on social life, and navigating the healthcare system. By addressing these multifaceted concerns, we can design and implement patient-centered education to empower patients through increased support.