Millions of Americans with COPD experience burdensome symptoms, reduced quality of life, and undesirable end-of-life care. Increasing palliative care for this vulnerable population is widely advocated to improve these important patient-centered outcomes. Yet patients with COPD rarely receive palliative care due, in part, to difficulties identifying which patients have unmet palliative care needs and palliative care workforce shortages. The proposed study's core objective is to address the national priority of improving palliative care for patients with COPD by developing an efficient, innovative, and patient-centered method to identify those with unmet palliative care needs. Specifically, the candidate seeks to (1) assess patients with COPD to determine their palliative care needs; (2) develop and validate an electronic health record-based classification model for each domain of palliative care needs; and (3) evaluate the relationship between the probability of having unmet palliative care needs and patient-centered clinical outcomes. The study will involve an in-person cross- sectional survey of 432 hospitalized patients with COPD of any stage. Participants will complete a validated survey to capture a wide variety of palliative care needs, which will be supplemented with expert chart review to identify patients with needs in any of three clinically relevant and actionable domains. These cases will be used as the patient-reported reference standard for development and validation of domain-specific classification models leveraging natural language processing of unstructured clinical text in electronic health records and machine learning methods. Finally, a large, multicenter retrospective cohort study will evaluate the associations between different probabilities of having unmet palliative care needs and several clinical outcomes important to patients, caregivers, and hospitals. This will enable the identification of thresholds of probabilities of unmet needs above which COPD patients' risks of undesirable clinical outcomes increase. Such patients will then be targeted for enrollment in future trials testing interventions to improve these outcomes. Completion of this research will build upon the candidate's past training, which includes a Masters in Health Policy Research obtained with NHLBI T32 support, an F32-supported post-doctoral fellowship, and a career development award from the National Palliative Care Research Center, and will provide the experience, education, and mentorship to allow the candidate to become a fully independent investigator. The candidate's rigorous training plan, focused on obtaining advanced skills in multisite prospective research, patient-centered outcomes research, and advanced bioinformatics methods will allow her to submit successful R01 or PCORI applications testing interventions directly informed by the results of this work. The candidate's primary mentor, collaborators, and advisors will ensure adherence to the proposed timeline and goals and provide a supportive environment for her to develop an independent research career focused on improving the uptake and effectiveness of palliative care for patients with COPD and other cardiopulmonary diseases.
Patients with COPD experience burdensome symptoms, reduced quality of life, and low quality end-of-life care. Palliative care may improve such outcomes, yet resources are strained and it is difficult to identify which patients are most in need. The aims of this research are to provide new knowledge regarding the unmet palliative care needs of patients with COPD and to develop a novel and scalable method to identify patients with such needs in order to reduce patients' suffering and improve quality of life.
