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A4270 - Educational Needs in Idiopathic Pulmonary Fibrosis for Healthcare Providers, Patients, and Caregivers
Author Block: D. Ramadurai1, S. Corder2, T. Churney3, B. Graney4, A. Harshman2, S. Meadows5, J. J. Swigris3; 1Internal Medicine, University of Colorado School of Medicine, Aurora, CO, United States, 2Office of Professional Education, National Jewish Health, Denver, CO, United States, 3Interstitial Lung Disease Program, National Jewish Health, Denver, CO, United States, 4Pulmonary Sciences and Critical Care Medicine, University of Colorado Anschutz Medical Campus, Aurora, CO, United States, 5Denver Health, Denver, CO, United States.
Rationale Idiopathic pulmonary fibrosis (IPF) is associated with poor quality of life (QOL), and as IPF progresses, QOL worsens. Nonspecific symptoms and the paucity of cases in daily practice lend to difficult and delayed diagnosis. In this study, we assessed the educational needs of providers who care for patients with IPF in parallel with IPF patients and their caregiver-loved ones. Methods A total of 2636 tailored surveys were sent to practitioners, patients with IPF, and caregivers of patients with IPF. Each of the three surveys included drop-down menu response options and a few open-ended questions with space for respondents to write answers. Providers answered questions regarding their own informational needs and what they believed was the most important information their patients needed. Patients and caregivers were surveyed about their own IPF-related informational needs and what information needs each perceived the other required. Results 371 surveys were completed by providers (182), patients (160), and caregivers (29). The majority of providers were physicians (86%) and stated they diagnosed and treated IPF patients themselves (80% of all providers, Provider Group 1). Other providers ran initial testing but referred out for subsequent care (Provider Group 2); some referred all patients out when the diagnosis of IPF was suspected (Provider Group 3); and still others referred out patients suspected to have IPF, but then treated and managed these patients themselves once a diagnosis was made (Provider Group 4). Providers in all four groups ranked information on “Making the Diagnosis of IPF” as their top educational need, with “HRCT Patterns” and “IPF Mimics” also prioritized. Providers chose “Disease Progression / What to Expect” and “IPF Drug Therapy” as the top educational needs for their patients. Both patients and caregivers chose “Disease Progression / What to Expect” as the most important educational need both for themselves and for each other. Conclusion Given the challenge and potential therapeutic and prognostic implications of making a diagnosis of IPF, providers want to make a correct diagnosis when IPF is in the differential diagnosis. Patients and caregivers desire clarity around how IPF will behave over time and what their futures with IPF will look like. Future research should focus on how to deliver educational content and its effect on diagnostic efficiency and accuracy and patient and caregiver satisfaction.