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

Rise-HP：重新构想对过敏性肺炎的支持和教育干预措施；

• 批准号: 10427983
• 负责人: Kerri Aronson
• 金额: $ 17.32万
• 依托单位: WEILL MEDICAL COLL OF CORNELL UNIV
• 依托单位国家: 美国
• 财政年份: 2022
• 资助国家: 美国
• 起止时间: 2022-09-01 至 2027-08-31
• 项目状态: 未结题
• 来源: https://reporter.nih.gov/project-details/10427983
• 关键词: Address; Advisory Committees; American; Antigens; Anxiety; Attitude; Behavior Therapy; Behavioral; Benchmarking; Chest; Chronic Disease; Clinical Trials; Clinical Trials Design; Cognitive; Cognitive Therapy; Development; Development Plans; Disease; Education; Educational Intervention; Effectiveness; Effectiveness of Interventions; Exposure to; Extrinsic allergic alveolitis; Feeling; Focus Groups; Foundational Skills; Foundations; Fright; Frustration; Future; Goals; Health; Home environment; Hybrids; Infrastructure; International; Interstitial Lung Diseases; Intervention; Investigation; Knowledge; Knowledge acquisition; Lead; Learning; Life Style; Measures; Medicine; Mental Depression; Mentors; Observational Study; Outcome; Outcomes Research; Participant; Patient Education; Patient Outcomes Assessments; Patient-Centered Care; Patient-Focused Outcomes; Patients; Peer Group; Persons; Protocols documentation; Psychometrics; Qualitative Research; Randomized Controlled Trials; Research; Research Design; Research Methodology; Research Personnel; Review Literature; Sampling; Scientist; Self Efficacy; Site; Social isolation; Societies; Source; Statistical Data Interpretation; Surveys; System; Testing; Thinness; Training; Uncertainty; Universities; Virginia; Visit; Work; acceptability and feasibility; attentional control; career; career development; coping; design; effectiveness implementation trial; effectiveness testing; evidence base; experience; fibrotic interstitial lung disease; health related quality of life; implementation outcomes; implementation science; improved; innovation; instrument; novel; patient oriented; peer; peer coaching; pilot test; preference; randomized trial; recruit; retention rate; skills; theories; therapy development; virtual; web site

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.

项目总结/文摘