At a medical conference, you stop to chat with researchers presenting a poster on how using supplemental oxygen affects patients with pulmonary fibrosis, a chronic respiratory disease. Several minutes pass before you realize you’re not speaking with physicians; these presenters are pulmonary fibrosis patients.
That’s exactly the scene that unfolded when Jeffrey James Swigris, DO, MS, invited his research partners to help present at a recent conference. Because his project is funded through the Patient-Centered Outcomes Research Institute (PCORI), Dr. Swigris has worked closely with pulmonary fibrosis patients through every step of his research, from determining the project’s focus to designing and carrying out the investigation.
Created by the Affordable Care Act, PCORI funds patient-driven projects that examine the outcomes of different treatments. Dr. Swigris, a pulmonologist in Denver, says tapping into patients’ expertise is critical to medical research because they have real-life experience with the interventions being studied.
Quantifying oxygen’s effects
Dr. Swigris is the principal investigator for a three-year, $1.2 million PCORI-funded project on how using supplemental oxygen affects quality of life for patients with pulmonary fibrosis. The project kicked off in August 2013 and will stop collecting data on patients, who were tracked for one year each, later this month.
Although physicians frequently prescribe daily supplementary oxygen for pulmonary fibrosis patients, there’s not much data on whether it helps people feel and function better, Dr. Swigris notes. Using supplemental oxygen can alleviate symptoms like cough and shortness of breath, but some patients find it to be a hassle logistically or feel it’s an obvious marker of their illness. “We wanted to be able to quantify whether being on oxygen expanded or shrank these patients’ worlds,” Dr. Swigris explains.
Designing a project
To investigate, the researchers recruited 300 pulmonary fibrosis patients who were not yet using supplemental oxygen; they hoped to end up with a pool of 80 patients whose doctors would recommend the intervention over the course of the study.
As time went on and some patients’ physicians advised them to start using oxygen, researchers captured data about their experiences. These patients used supplemental oxygen for daily activities, such as a trip to the grocery store. Each patient was tracked for one year: just before starting oxygen, one month later, and nine to 12 months later. At each stage, researchers tracked patients’ activity using fitness trackers and conducted interviews with more than 100 patients and caregivers.
The research team will finish collecting data later this month, but they have several hypotheses on the study’s findings.
“Over time, as people adapt to the burdens of using oxygen, we anticipate their outcomes will improve—they’ll be more active because they’ll feel less fatigued and not as worried about social stigma,” Dr. Swigris notes.
‘Patients are the real experts’
For Dr. Swigris, the project’s focus on quality of life is deeply rooted in the osteopathic philosophy of caring for patients’ mind, body and spirit. “Improving how patients feel physically, mentally and emotionally is my whole research philosophy—we don’t ever want to look at just the physical side, because pulmonary fibrosis affects patients in many ways,” he says. For example, patients may struggle to cope with knowing they have a chronic, progressive illness or wonder how to navigate relationships with loved ones who also serve as caregivers.
For other DOs who’d like to pursue research funding through PCORI, Dr. Swigris’s advice is simple: Talk to patients. “Patients are the real experts on their disease,” he says. “If you can marry your clinical interests with their wishes and needs, that provides a great setup for a study.”