Integrating Palliative Care for Patients with Idiopathic Pulmonary Fibrosis and their Caregivers

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ABSTRACT Candidate: This candidate has a relevant clinical background, solid research experience working on the Idiopathic Pulmonary Fibrosis (IPF) intervention development, an extremely strong publication record with several being published in high impact journals, and highly recommended letters of reference. Her research has revealed multiple end of life (EOL) concerns of patients/family caregivers. Unfortunately many of these concerns continue today. Her proposed research is designed to test ways to gain broad support for the early and uniform initiation of palliative care to overcome this barrier. Her long-term goal is to become a successful independent academic researcher who designs and tests interventions to improve palliative care preparedness of patients with life-limiting illness and their family caregivers. The proposed training program will include didactic and clinical instruction in communication theory, palliative care decision-making and the design and implementation of clinical research projects. The planned development program includes a mentored practicum at the University of Washington, an intensive 2-week Palliative Care Course at Harvard University, multidisciplinary seminars and training from mentors providing specific expertise. Environment: The work environment at the University of Pittsburgh Dorothy P. & Richard P. Simmons Center for Interstitial Lung Disease at UPMC is an extremely strong clinical environment abundant in both physical and intellectual resources. The environment is strengthened by appropriate activities at Harvard and University of Washington. Research: IPF is a disease of aging associated with intense medical and financial burden and expected to grow in incidence within the US population. Median survival from diagnosis is 3.8 years, although some patients succumb to a rapid death within 6 months. New therapies have recently become available. While these medications slow the rate of pulmonary deterioration, they have no impact on ultimate survival or quality of life. Although transplantation is an effective surgical therapy, less than 20% of patients ever receive a lung transplant. The remaining 80% have few treatment options and a likely rapidly progressive downhill course. Despite the fatal prognosis, we have found that patients and caregivers often fail to understand the poor prognosis as the disease relentlessly progresses. At the end of life, IPF patients and their caregivers experience stress, symptom burden, poor quality of life, and inadequate preparedness for end-of-life care planning. The proposed study will measure feasibility, acceptability, and impact of a Supportive Care intervention. Patients with IPF and their caregivers will be randomized to receive this intervention or usual care. The intervention will include information about the disease, self-management strategies, and introduction to advanced care planning in a format with enhanced content available across multiple domains (face-to-face, printed material, digital (tablet) delivered by an interventionist. The usual care group will be provided with routine printed patient education. The Specific Aims include: Aim 1: Determine feasibility (as measured by recruitment and retention rate) of the Supportive Care intervention for IPF patients and caregivers. Aim 2: Determine the acceptability of the Supportive Care intervention on knowledge regarding disease, self- management and treatment strategies for patients and their caregivers. Aim 3: Assess impact of the Supportive Care intervention on patient stress, symptom burden, quality of life, and completion of advanced care planning as compared to care as usual. The overarching goal of this proposal is determine the feasibility, acceptability and preliminary impact of an early, integrated palliative care intervention, hereafter termed Supportive Care, in patients with Idiopathic Pulmonary Fibrosis (IPF) and their caregivers that will positively impact their experiences at the end-of-life (EOL). By increasing knowledge of the disease, teaching self-management strategies, and facilitating preparedness with EOL planning, we will begin to address a critical gap in the care of not just IPF patients but also all patients with advanced lung disease (high medical utilization and high symptom burden in the face of a fatal illness).