Patient Priorities in Lung Transplant: Quality of Life Outcomes to Inform Decision Making

Project Abstract/Summary As a health services researcher and Assistant Professor at Temple University, my long-term career goal is to become a leader in preference-based, patient-centered outcomes research to inform decision making for patients with end-stage lung disease, specifically about transplantation decisions. Clinical trials have shown that decision aids improve the quality and efficiency of decision making, improve comprehension and decrease decisional conflict. Despite these benefits, few decision aids have addressed the complexity of lung transplant. A critical barrier to the development of decision aids is the inability to inform and communicate to patients and caregivers the impact of transplant on quality of life (QoL). Thus, to address these knowledge gaps and pursue my long-term career goals, I will investigate patient priorities for QoL outcomes in the context of lung transplant decision making to inform the development of a decision aid. Three Specific Aims will accomplish this objective. AIM 1: Describe priorities for QoL outcomes and their impact on decision making among patients (n=30-40) and caregivers (n=30-40) at each phase of lung transplant, and clinicians (n=10-15). AIM 2: Measure QoL, priorities for outcomes, and willingness to trade between quantity and quality of life among a prospective cohort of patients (n=200) and caregivers (n=200) considering lung transplant using health-related quality of life measures, best- worst scaling tasks, and treatment tradeoff exercises. AIM 3: Develop and assess the feasibility and acceptability of a decision aid among patient and caregiver dyads (n=30) considering lung transplant. To accomplish these aims, I propose a mixed method approach. Qualitative methods include semi-structured interviews conducted in cross-sectional samples across transplant phases (Aim 1). Quantitative surveys and the feasibility/acceptability study will be collected among patients with end-stage lung disease just starting to consider transplant, as well as their caregivers (Aims 2 and 3). A prospective cohort will be followed over time to identify differences across phases of decision making (Aim 2). Although I have had a productive start to my career, I require further training to execute these Aims, accomplish these goals and achieve independence as an investigator. Specifically, I have identified four short-term career objectives. I will: 1) lead a community-engaged research effort inclusive of patients, caregivers and clinicians; 2) design and implement qualitative and mixed methods approaches to collect and analyze patient experience data; 3) obtain formal training in theory of decision making, interpersonal health communication and risk communication; and 4) acquire domain expertise to apply these skills in the context of lung transplant. I have designed a career development plan to achieve these objectives that includes mentorship from a highly accomplished group of researchers who are dedicated to my career development and experts in decision making theory, decision aid design, health and risk communication, qualitative and mixed methods, and lung transplant. These mentors have long histories of extramural funding and mentoring. In addition to mentored instruction, I will complete didactic coursework and intensive professional trainings.