Improving Decision Making for Patients with COPD Choosing Between Lung Transplantation and Medical Management

Grant Application

Cynthia J. Gries, MD, UPMC Presbyterian, in partnership with Douglas White, MD, MAS, Mary Amanda Dew, PhD, Annette De Vito Dabbs, PhD, RN, FAAN, and Joseph Pilewski, MD; Frank Sciurba, MD, FCCP, of the University of Pittsburgh; Brad Myers, PhD, Carnegie Mellon University; and Michael Pignone, MD, MPH, FACP, University of North Carolina

Proposed Innovation

Chronic Obstructive Pulmonary Disease (COPD) is the third leading cause of death in the United States, claiming more than 130,000 lives each year. Patients with severe COPD have a four-year survival rate of less than 20 percent and a low quality of life due to shortness of breath, fatigue, and recurrent hospitalization. COPD is irreversible; the only viable therapeutic options for advanced disease are medical management for symptom relief or lung transplantation. Unlike most organ transplants, lung transplantation for COPD does not clearly offer a survival benefit compared to medical treatment alone. While lung transplantation may improve quality of life, it can lead to serious complications, including ventilator dependence, rejection, recurrent infections, renal failure, and cancer.

Treatment options involve significant tradeoffs affecting quality and length of life. Through this project, a website is being developed as a health literacy decision aid to educate patients about their treatment options, risks, and potential benefits so their decision accurately reflects their personal values and preferences. The goal is to help patients “think things through” so they can make an informed decision.

Improvements

A multi-disciplinary research team — including experts in health literacy, decision science, human computer interaction, and technology — worked together to develop an effective decision-making tool. The team also worked directly with seniors, lung transplant recipients, and patients awaiting transplants to gather feedback on the usability and acceptability of the decision aid.

Outcomes

An iterative approach was used to develop a high fidelity web-based decision support tool. The team also conducted usability testing of the web-based decision aid with patients who were considering lung transplantation and medical management. The final prototype will be incorporated into a pilot study to demonstrate feasibility of a larger randomized control study.