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The BREATHE Study: An Integrative Multilevel Study for Improving Patient-Centered Care Delivery Among Patients with Chronic Obstructive Pulmonary Disease
(BREATHE stands for Better Respiratory Education And Treatment Help Empower)
Chronic obstructive pulmonary disease (COPD) is the fourth-leading cause of death in the United States and a major cause of hospitalizations and emergency department visits.
When patients with COPD are about to be discharged from the hospital, they are often overwhelmed with instructions and paperwork. However, they may still go home without a clear understanding of how to manage their disease. About half of all COPD patients do not know how to properly use an inhaler. Simple household tasks, such as taking a shower or walking up the stairs, can trigger an episode of panicked breathlessness and frequent coughing that can send them back to the hospital.
With funding support from the Patient-Centered Outcomes Research Institute (PCORI), our team sought to develop and evaluate a patient and family-centered comprehensive program to support patients with COPD and their caregivers as they leave the hospital and increase their capacity to manage COPD at home.
Called BREATHE — Better Respiratory Education And Treatment Help Empower — the program goal is to improve the health-related quality of life among individuals hospitalized for COPD and reduce their future need to visit the hospital or emergency room.
We tested the BREATHE program in a randomized controlled trial that we conducted at Johns Hopkins Bayview Medical Center among 240 patients who were hospitalized due to COPD. A random half of the patients received the BREATHE program with their caregivers (if they had one), while the other half received usual care.
Through the BREATHE study, I feel like I've gotten more tools and access to tools and information that I need to help Henry cope with his illness for the rest of his life.
- Edie, wife and caregiver of a person living with COPD
Patients and caregivers participating in the BREATHE program met with a specialized nurse transition guide, referred to as a COPD nurse, starting during the hospital stay and for a three-month period postdischarge. Specially trained to support COPD patients and their caregivers, this nurse:
- Met with the patient (and caregiver, if available) as early as possible during the hospital stay to review their medical information and assess their needs and understanding of COPD.
- Communicated with the patient’s medical providers about their needs and barriers to care.
- Conducted follow-up home visits and phone calls.
- Was available by phone to answer patients’ and caregivers’ questions or concerns.
- Helped patients and caregivers develop a better understanding of COPD, the treatment plan and self-management skills, such as breathing exercises and recognizing early signs of COPD exacerbations (flare-ups).
- Contacted providers in the hospital and clinic as needed with any concerns or problems.
- Connected patients as needed with existing services such as programs for transportation, smoking cessation, mental health and substance abuse, as well as peer support groups/hotlines.
- Patients and their caregivers were also informed about and connected with existing services in areas such as transportation, smoking cessation, mental health and substance abuse, as well as peer support groups/hotlines.
The BREATHE study wrapped up in spring 2017, and we are preparing study results for publication.
Meet our Project Team
The BREATHE team is composed of a diverse project team of researchers, multidisciplinary health care professionals and leaders, community advocates and patients with COPD and their caregivers.
H. Aboumatar, M. Naqibuddin, S. Chung, et al. Better Respiratory Education and Treatment Help Empower (BREATHE) study: Methodology and baseline characteristics of a randomized controlled trial testing a transitional care program to improve patient-centered care delivery among chronic obstructive pulmonary disease patients, in Contemporary Clinical Trials, Volume 62, 2017, pages 159-167, ISSN 1551-7144
News and Publications
- Empowering People with COPD to Better Manage Their Symptoms, PCORI blog, Nov. 27, 2017
- Mining Patients’ Wisdom for Safer Care, U.S. News & World Report, May 4, 2015
- “Johns Hopkins Awarded $2.1 Million to Improve Post-Hospital Care for Chronic Obstructive Pulmonary Disease,” Media release, Oct. 2, 2013
- Supporting Patients with COPD over the Long Term, PCORI, Nov. 2017