What Do Patients Need to Learn About their Hypersensitivity Pneumonitis?

Hypersensitivity pneumonitis (HP) is among the constellation of 200-plus interstitial lung diseases (ILDs)—an inflammatory condition that could result in lung scarring due to environmental exposures in patients. Aside from being a rare condition with limited treatment options, HP care is encumbered by the general lack of knowledge patients possess about the condition, its progression and best practices to manage it.

In an interview featured in the first issue of The Respiratory Report, a quarterly pulmonology research newsletter powered by the American Lung Association Research Foundation, Kerri Aronson, MD, MS, assistant professor of medicine in pulmonary and critical care at Weill Cornell Medicine, discussed her team’s research that aims to create educational resources addressing poor patient knowledge around HP.

As Aronson explained in the interview, the poor level of patient knowledge on HP is directly linked to worsened patient health-related quality of life, based on previous research.

“(We’ve discovered that) there’s a lot of other psychosocial impacts on quality of life, related to trying to identify and avoid exposures, how it impact’s people’s home life and their work environment,” Aronson explained. “And another thing I learned was that the lack of knowledge and understanding about the disease and its treatments was very profound, and had a very profound impact on people’s quality of life and caused a lot of suffering.”

These discoveries inspired Aronson and colleagues to find the means to address these effects through the creation of accessible, patient-targeted resources—an intervention “that delivers both behavioral components and also an education component.” Part of their work is conducting quantitative survey research with patients with HP to identify the biggest gaps in clinical knowledge.

Among the issues Aronson and colleagues observed were patients’ misunderstanding of how to identify HP exposure risks, how to live well with their disease, and what treatment options are available for them.

“All of the questions that we answer for people, we worked with a medical librarian, we did a full review of the literature to answer the question,” Aronson said. “And so, we have a clinician answer, which is a very long review, and then we took that and made that into patient-facing text, and then there's a knowledge question at the end to assess the patient's understanding of the material.”

To learn more about Aronson’s research, read her contribution to the first issue of The Respiratory Report here:

Improving Patients’ Knowledge About Hypersensitivity Pneumonitis