Impact of a disease-management program on symptom burden and health-related quality of life in patients with idiopathic pulmonary fibrosis and their care partners
published online 23 November 2009.
Background
Patients were recruited from the Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease, located within the University of Pittsburgh Medical Center. Idiopathic pulmonary fibrosis results in scarring of the lung and respiratory failure, and has a median survival of 3 to 5 years from the time of diagnosis. The purpose of this study was to determine whether patients with idiopathic pulmonary fibrosis and their care partners could be more optimally managed by a disease-management intervention entitled “Program to Reduce Idiopathic Pulmonary Fibrosis Symptoms and Improve Management,” which nurses delivered using the format of a support group. We hypothesized that participation would improve perceptions of health-related quality of life (HRQoL) and decrease symptom burden.
Methods
Subjects were 42 participants randomized to an experimental (10 patient/care partner dyads) or control (11 patient/care partner dyads) group. Experimental group participants attended the 6-week program, and controls received usual care. Before and after the program, all participants completed questionnaires designed to assess symptom burden and HRQoL. Patients and care partners in the intervention group were also interviewed in their home to elicit information on their experience after participating in the Program to Reduce Idiopathic Pulmonary Fibrosis Symptoms and Improve Management.
Results
After the intervention, experimental group patients rated their HRQoL less positively (P = .038) and tended to report more anxiety (P = .077) compared with controls. Care partners rated their stress at a lower level (P = .018) compared with controls. Course evaluations were uniformly positive. Post-study qualitative interviews with experimental group participants suggested benefits not exemplified by these scores. Patient participants felt less isolated, were able to put their disease into perspective, and valued participating in research and helping others.
Conclusion
Further exploration of the impact of disease-management interventions in patients with advanced lung disease and their care partners is needed using both qualitative and quantitative methodology. Disease-management interventions have the potential to positively affect patients with advanced lung disease and their care partners.
aDorothy P. and Richard P. Simmons Center for Interstitial Lung Disease, Pulmonary Allergy and Critical Care Medicine Division, University of Pittsburgh, Pennsylvania
bNursing Science Program, College of Health Sciences, University of California, Irvine
cSchool of Nursing, The University of North Carolina at Chapel Hill
dDepartment of Acute/Tertiary Care, University of Pittsburgh School of Nursing, Pennsylvania
Corresponding author: Kathleen Lindell, PhD, RN, Dorothy P. and Richard P. Simmons Center for Interstitial Lung Disease, NW 628, UPMC Montefiore, 3459 Fifth Avenue, Pittsburgh, PA 15213.
Funding for this study was provided by the Fairbanks- Horix Foundation.
Work was performed at the University of Pittsburgh Medical Center.
Drs Lindell, Olshansky, Song, Zullo, Gibson, Kaminski, and Hoffman have no conflict of interest.
ABSTRACT