Uncertainty Among Patients Undergoing Lung Transplant Evaluation
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ABSTRACT As a palliative-care trained physician completing pulmonary fellowship at the University of Colorado (UC), I am ideally positioned to conduct research focused on improving quality of life for patients with chronic lung disease (CLD). I have already been productive in clinical research, publishing 5 abstracts, 2 first author and 8 co- authored papers while pursuing clinical training. This NIH F32 Ruth L. Kirschstein National Research Service Award (PA-21-048) submission will allow me to progress toward my long-term goal to improve quality of life for patients with CLD by designing interventions to address illness uncertainty. The objective of this proposal is to characterize illness uncertainty and illness communication among patients undergoing lung transplant evaluation using quantitative and qualitative methodologies. I have assembled an excellent mentorship team and the research environment at UC is ideal to complete this project. I have already obtained funding from the Division of Pulmonary Sciences and Critical Care Medicine at UC to perform the data collection for this proposal. Patients with CLD suffer from a high symptom burden, poor quality of life, and a limited and uncertain prognosis. Patient perception of uncertainty (“illness uncertainty”) occurs when patients are unable to make sense of their changing symptoms, declining functional status, and communication from clinicians. Illness uncertainty is related to worse quality of life, depression, and anxiety in a variety of chronic illnesses, including CLD. For patients with severe CLD, lung transplant improves quality of life and survival. However, lung transplant evaluation is a time of distress and uncertainty. Characterizing illness uncertainty among patients who are undergoing lung transplant evaluation is an important step in identifying factors associated with uncertainty, and designing interventions aimed at reducing uncertainty and improving quality of life. Patients report that better clinician communication about disease progression may decrease illness uncertainty. How to best communicate what patients find important about how their disease will progress and impact their lives (“illness communication”) has not been studied in CLD or among patients undergoing lung transplant evaluation. Based on our preliminary data, we expect that patients will want information about topics beyond an estimate of time remaining, such as progression of symptoms. The proposed study will 1) characterize uncertainty and the illness communication patients find important using a survey of patients undergoing lung transplant evaluation, and 2) understand how patients perceive illness uncertainty and illness communication using semi-structured patient interviews, analyzed using a content analysis framework. The data obtained from this proposal will inform the development of an intervention addressing illness uncertainty and improving illness communication with patients with CLD, which will be the focus of my K23 application.
