Improving Patients’ Knowledge About Hypersensitivity Pneumonitis

Hypersensitivity pneumonitis (HP) is an interstitial lung disease (ILD) caused by inhalation of an environmental antigenic stimulus in a susceptible individual. HP can manifest as an often incurable and progressive fibrotic ILD leading to poor health-related quality of life (HRQoL). Our prior work has uncovered that people living with HP experience a profound lack of knowledge about their disease, uncertainty, feelings of anxiety, fear, and frustration all contributing to poor HRQoL.¹

HRQOL and disease-specific knowledge acquisition are highlighted by the American Thoracic Society as high priority patient-centered endpoints in ILD research.² Few interventions have been designed to improve these endpoints for patients living with HP, which leaves a crucial gap in patient-centered care.

Our team is working to develop a peer delivered behavioral and educational intervention to help improve the lives of patients living with Hypersensitivity Pneumonitis.³ With support from the American Lung Association, we conducted a study that will lay the foundation for the digital educational materials to be used in this intervention and provide the ILD clinical and patient community with verified resources to improve knowledge about HP.

In order to inform the educational content, we conducted structured group sessions using the nominal group technique (NGT). The NGT is a semi-quantitative technique used to set priorities among a group of stakeholders.^4,5 We conducted a total of 5 group sessions that included a total of 21 participants living with HP recruited from 2 academic medical centers.

We asked participants to provide us with the questions that they had about HP that keep them awake at night or to which reliable answers they cannot find. After all participants shared their perspectives, they were then asked to rank the questions they felt were most important to be answered using a digital health education platform. The questions posed by participants fell into seven themes prioritized in the following order:

1. Natural history and prognosis
2. Current treatment options and therapeutic research
3. Epidemiology and etiology of HP
4. Living well with HP
5. Origin and management of symptoms
6. Identifying and mitigating exposures
7. Methods of educating patients, clinicians and others about HP

The top priority questions posed by participants were the first ones to be answered using an online digital health platform: The Patient Activated Learning System (PALs), a publicly available website that provides engaging, easily understood, and well-researched information about health and disease to clinicians and patients.⁶

For each question, our team created content called a Reusable Knowledge Object (RKO). For each RKO created, we conducted a scoping review of the literature with a medical librarian, developed an evidence summary based out he literature, and then translated it into patient-facing text. Each RKO is also accompanied by a knowledge assessment question. All RKOs are reviewed by an HP patient advisory committee.

There are now 10 RKOs developed for interstitial lung disease, 4 of which have been published, and several more are under development. These RKOs will be tested as the educational content in a virtual peer delivered behavioral and educational intervention for people living with HP.

The development of a free online interactive educational curriculum for patients also provides the clinical and research community with a resource for inclusion of high quality and evidence-based education that can be adapted to various clinical settings and incorporated into evaluation of e-health interventions and clinical trials designed to improve patient-centered outcomes in HP.

References

1. ^{Aronson KI, Hayward BJ, Robbins L, Kaner RJ, Martinez FJ, Safford MM. ‘It’s difficult, it’s life changing what happens to you’ patient perspective on life with chronic hypersensitivity pneumonitis: a qualitative study. BMJ Open Respir Res. 2019;6(1):e000522. doi:10.1136/bmjresp-2019-000522}
2. ^{Aronson KI, Danoff SK, Russell A-M, et al. Patient-centered Outcomes Research in Interstitial Lung Disease: An Official American Thoracic Society Research Statement. Am J Respir Crit Care Med. 2021;204(2):e3-e23. doi:10.1164/rccm.202105-1193ST}
3. ^{Aronson KI, Holbrook N, Edgar A, et al. Interventions to improve quality of life and knowledge in Hypersensitivity Pneumonitis, a survey of clinician practices and perspectives. CHEST Pulmonary. July 2024:100083. doi:10.1016/j.chpulm.2024.100083}
4. ^{Harvey N, Holmes CA. Nominal group technique: an effective method for obtaining group consensus. Int J Nurs Pract. 2012;18(2):188-194. doi:10.1111/j.1440-172X.2012.02017.x}
5. ^{Rice DB, Cañedo-Ayala M, Turner KA, et al. Use of the nominal group technique to identify stakeholder priorities and inform survey development: an example with informal caregivers of people with scleroderma. BMJ Open. 2018;8(3):e019726. doi:10.1136/bmjopen-2017-019726}
6. ^{Carmel AS, Cornelius-Schecter A, Frankel B, et al. Evaluation of the Patient Activated Learning System (PALS) to improve knowledge acquisition, retention, and medication decision making among hypertensive adults: Results of a pilot randomized controlled trial. Patient Educ Couns. 2019;102(8):1467-1474. doi:10.1016/j.pec.2019.03.001}