Abstract
BACKGROUND: Understandable, comprehensive, and accessible educational materials for patients with interstitial lung disease (ILD) are lacking. Patients consistently ask for improved access to evidence-based information about ILD. Nonetheless, few research studies focus directly on developing and evaluating interventions to improve patient knowledge. OBJECTIVE: We describe the current landscape of patient education in ILD, identify gaps in current approaches to information delivery, and provide frameworks to address these challenges through novel educational tools. METHODS: A literature review was conducted in collaboration with a medical librarian (M.R.D.) in April 2022 using Ovid MEDLINE (1946-), Embase (1947-), Cochrane Central (1993-), and CINAHL (1961-). Search terms included "interstitial lung disease," "pulmonary fibrosis," "patient education," and "information seeking behavior" (see the data supplement for full search terms). Reference lists from selected articles were used to identify additional studies. RESULTS: Currently, patient education is commonly combined with exercise regimens in pulmonary rehabilitation programs in which benefits of the educational component alone are unclear. Few studies investigate improving knowledge access and acquisition for patients with ILD and their caregivers regarding self-management, oxygen use, and palliative care plans. Online distribution of health information through social media runs the risk of being unregulated and outdated, although it is an avenue of increasing accessibility. CONCLUSION: By expanding access to novel ILD-specific education programs and accounting for social determinants of health that impact healthcare access, patient education has the potential to become more attainable, improving patient-centered outcomes. Further research into optimal development, delivery, and efficacy testing of patient education modalities in ILD is warranted.