Preparation for lung transplant discussions and decisions among people with cystic fibrosis

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Project Summary Cystic fibrosis (CF) is a progressive, fatal genetic condition (median age at death was 34 years in 2020). Lung transplant (LTx) is a treatment for end-stage CF and confers 10 years median survival for adults with CF. In the U.S., among CF patients with forced expiratory volume in 1 second (FEV1) less than 30% of predicted, more patients die each year than undergo LTx. More than half of CF patients who die without LTx are never referred for consideration. CF patients with lower socioeconomic status (SES) or non-White race have decreased referral for LTx and worsened survival. Hispanic CF patients have a nearly 3-fold increased risk of death without LTx compared to non-Hispanics. Patient preference may account for 25-40% of decisions to defer referral, but choices may at times be informed by inaccurate assumptions regarding LTx. CF patients with low FEV1 have high rates of anxiety and depression, which may contribute to avoidance of LTx conversations. Increasing LTx comprehension, and promoting the process of deliberation, could reduce the number of people with CF who die without LTx. We collaborated with CF patients, caregivers, and physicians to develop Take on Transplant (ToT): a web- based, patient-facing resource for LTx education. ToT shares personal narratives of CF patients and caregivers and up-to-date, CF-specific, guideline-based medical information about LTx. The overall research objectives are to test the efficacy of ToT compared to an attention control in a multicenter randomized clinical trial incorporating mixed methods to assess preparedness for LTx discussions among CF patients with FEV1 <50% predicted (oversampling from communities of concern – low SES, Hispanic ethnicity, or non-White race), explore the impact of ToT on patients’ psychosocial functioning, and assess patients’ and physicians’ perceptions and use of LTx education. Our research will examine patient-physician interactions and explore factors that may determine if/when physicians discuss LTx with CF patients in communities of concern (e.g. perceived eligibility for LTx, implicit bias, assessment of psychosocial factors) and the impact of ToT on patients’ readiness for LTx discussions. In line with National Institute of Nursing Research (NINR) priorities, our research focuses on improving a process that disadvantages patients with lower SES, non-White race, or Hispanic ethnicity and leads to health disparities. We aim to empower patients to discuss LTx. The proposed R01 will test the impact of ToT on preparedness for LTx discussions, will oversample patients from communities of concern, and will evaluate patient-physician dynamics, including implicit bias and discrimination, which may limit access to LTx in this disadvantaged population.