Kerri Aronson, MD

Hypersensitivity Pneumonitis (HP) is a type of interstitial lung disease that develops after inhalation of an environmental allergen in a susceptible person. HP has a negative effect on quality of life. Unfortunately, there is not much accurate and patient-friendly education material about HP. We plan to use a validated digital health platform to develop a patient curriculum about HP and study how this improves patients’ knowledge, satisfaction, and quality of life. We will ask patients to describe and prioritize the questions about living with HP they feel are most important, and then subsequently build an interactive virtual curriculum that address these knowledge gaps. This research will lay the groundwork for a future study that combines patient education and peer support for patients with HP, with the goal of improving quality of life and disease-specific knowledge.

Update:
We are conducting focus group sessions with a diverse group of patients with hypersensitivity pneumonitis (HP) with the goal of identifying and prioritizing patients’ top priority questions about the disease. These questions will then be answered in a digital health education curriculum geared towards improving knowledge gaps, self-efficacy and quality of life of patients living with HP.

Final Project Update:
Hypersensitivity pneumonitis (HP) is a type of interstitial lung disease that develops after inhalation of an environmental allergen in a susceptible person. People who live with HP face negative effects on their quality of life and have significant uncertainty and lack of knowledge about their disease. 

In this study, we leveraged a validated digital health platform to develop a patient curriculum about HP. We conducted virtual structured group discussions with people who are currently living with HP. During the sessions we asked the participants to describe the questions about living with HP they feel cause them the most uncertainty and the information that they feel is most difficult to access. The participants then worked together to rank the top priority questions to be included in the proposed digital health curriculum. We have subsequently built an interactive virtual curriculum that addresses these top priority knowledge gaps using the Patient Activated Learning System (palsforhealth.com). The results from this project will help set up a larger future study that combines digital health education and peer support for people with HP (RISE-HP) where we will study how the intervention impacts quality of life, self-efficacy, and knowledge about the disease.