IMPROVING END-OF-LIFE CARE FOR PATIENTSWITH IDIOPATHIC PULMONARY FIBROSIS AND THEIR CARE PARTNERS

Abstract

Palliative care is increasingly recognized as relevant to the care of advanced disease in a variety of settings. Idiopathic pulmonary fibrosis (IPF) results in scarring of the lung, respiratory failure and, commonly, death within 3-5 years of diagnosis. The purpose of this study was to evaluate the impact of a 6-week program designed using palliative care concepts (PRISIM) on symptom burden and health-related quality of life (HRQoL) in patients with IPF and their care partners. Subjects were 42 participants randomized to an experimental (10 patients/care partners) or control (11 patients/care partners) group. The experimental group attended the 6-week PRISIM program and the control group received usual care. Prior to and immediately after attending the program, all participants completed questionnaires designed to assess anxiety, depression, perceived stress, and HRQoL. Participation in PRISIM decreased perceptions of physical HRQoL and tended to increase anxiety. Nevertheless, post course evaluations were highly positive. Post study qualitative interviews with experimental group participants yielded three common themes that reached saturation: "patients did not feel isolated", were "able to put their disease into perspective", and felt it "important to participate in research and help others". Palliative interventions may increase anxiety but appear to yield other positive effects. Further exploration of the impact of such interventions is needed using both qualitative and quantitative methodology