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

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

Lessons from Our Patients: Development of a Warm Autopsy Program

Kaminski and colleagues discuss the lessons they have learned in establishing a warm autopsy program to advance research on idiopathic pulmonary fibrosis

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

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

Warm Autopsy Process

<p>Warm Autopsy Process</p