Background: About 1 million individuals in the United States have a prescription for supplemental oxygen (O2). Using O2 can prolong life and increase quality of life. Patients often do not use their oxygen as prescribed, which means that they are not benefiting as much as they could be from this therapy. In focus groups, patients with chronic obstructive pulmonary disease (COPD) and their caregivers emphasized their need for reliable information about O2, including information about O2 delivery systems, social aspects of O2 use such as embarrassment about using O2 in public, and concerns such as fear of becoming addicted to O2. They expressed a strong interest in getting help from peers who can coach them through the process of adjusting to O2. Data from studies in other populations suggest that peer coaching by phone can help patients improve self-management skills and outcomes. However, the effectiveness of peer coaching in helping patients with COPD use O2 is unknown. We expect that a Peer- Led O2 Infoline for Patients and Caregivers (PELICAN) will increase adherence and improve health. We have developed a broad-based team that includes patients and caregivers, the COPD Foundation, a national O2 supplier, and others to test whether PELICAN leads to increased O2 use and outcomes important to patients.
Objectives: Using input from COPD patients and their caregivers, we will develop patient-centered educational and support materials tailored to their needs, to be used in PELICAN. We will study whether PELICAN is effective and results in increased use of O2 as prescribed, more positive attitudes and beliefs about O2 use (such as confidence in the ability to use O2 despite barriers such as social discomfort), and other outcomes. The long-term goal is to help patients use their O2 as prescribed so they can be as healthy as possible.
Methods: We will meet with groups of patients with COPD who use O2 and their caregivers to help develop the materials to be used in PELICAN. We will pilot test the materials with a small number of patients, and will modify the materials based on results and feedback from participants. We will then test the effectiveness of the intervention with 450 patients with COPD. We will compare a proactive version of the intervention (peer coaches will contact patients by telephone to deliver the intervention) to a reactive version of the intervention (patients have the option of calling the peer coaches to get information about O2) and to usual care (written self-help materials).
Projected patient outcomes: PELICAN will address patients’ attitudes and beliefs about O2, including confidence in their ability to use O2 and their understanding of the benefits of using O2 as prescribed. PELICAN has the potential to greatly improve appropriate O2 use and quality of life of COPD patients, by using a non-invasive strategy tailored to their needs.
Patient Involvement in the Design of a Patient-Centered Clinical Trial to Promote Adherence to Supplemental Oxygen Therapy in COPD (Abstract only available)
K.E. Holm,R. Casaburi, S. Cerreta, J.A. Krishnan et al., "Patient Involvement in the Design of a Patient-Centered Clinical Trial to Promote Adherence to Supplemental Oxygen Therapy in COPD," Patient (October 2015).
Krishnan JA, Gussin HA, Prieto-Centurion V, Sullivan JL, Zaidi F, Thomashow BM. Integrating COPD into Patient-Centered Hospital Readmissions Reduction Programs. Chronic Obstr Pulm Dis (Miami). 2015;2(1):70-80. PubMed PMID: 25927076; PubMed Central PMCID: PMC4410712.