Rise-HP: Reimagining Interventions for Support and Education in Hypersensitivity Pneumonitis; A Stakeholder Engaged Intervention to Improve Health-Related Quality of Life

Project Summary/Abstract
Hypersensitivity Pneumonitis (HP) is an often incurable and potentially progressive fibrotic interstitial lung
disease (ILD) with limited treatment options that leads to poor health-related quality of life (HRQOL). Patients
with HP experience a profound lack of knowledge about the disease, uncertainty, intense hypervigilance,
feelings of anxiety and depression, and marked disruption to their lifestyle and home environment. HRQOL is
highlighted by the American Thoracic Society as a priority patient-centered endpoint in ILD research. Despite
this, no interventions have been designed to improve the HRQOL of patients living with HP, highlighting a
crucial gap in patient centered care. The objective of this proposal is to develop and pilot test a behavioral and
educational intervention (“Reimagining Interventions for Support and Education in HP: “RISE-HP”) that targets
the key domains of HP-HRQOL and patient knowledge as an innovative strategy to improve the lives of
patients with HP. I hypothesize an intervention that delivers peer coaching using cognitive behavioral principles
combined with theory-driven patient education will improve HRQOL of patients with HP. To accomplish this
objective, I propose the following research aims: 1.) Determine the barriers and facilitators of improving HP-
specific HRQOL, patient perceived knowledge gaps, and stakeholder preferences to inform the framework for
the RISE-HP intervention 2.) Develop and iteratively refine the novel RISE-HP intervention with stakeholder
input. 3.) Conduct a pilot randomized controlled trial to determine the feasibility and acceptability of the RISE-
HP intervention. I will work closely with a patient advisory committee through all Aims of the proposal. Findings
from this study will lay the groundwork for a multi-center randomized controlled trial to test the effectiveness of
the RISE-HP intervention. I will expand on my prior training in observational study design and analysis to
develop foundational skills to become an independent investigator with expertise in stakeholder-engaged
intervention development, qualitative research methods, behavioral and educational interventions, and conduct
of real-world clinical trials with assessment of implementation outcomes. I will be mentored by three
internationally recognized clinician scientists, Dr. Monika Safford, Dr. Fernando Martinez, and Dr Robert Kaner.
Together we designed a career development plan for me to gain skills through experiential leaning by carrying
out the research aims supplemented by didactic work and additional career development benchmarks. By
conducting the proposed research, I will advance toward my long-term career goal of becoming an
independent investigator focused on patient-centered outcomes research in ILD, specifically by developing and
testing interventions that improve HRQOL. This proposal will advance the ILD field by developing a novel
patient-centered intervention aimed at improving HRQOL of patients with HP and allow me to build the first HP-
specific multisite infrastructure for a larger national hybrid type I effectiveness-implementation trial.

Grant Number: 5K23HL163394-04
NIH Institute/Center: NIH
Principal Investigator: Kerri Aronson