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.