The object of the proposed study is to enhance the quality of end-of-life (EOL) cancer care by developing and testing a patient-centered intervention to better inform patients with advanced pancreatic cancer about prognosis and the risks/benefits of their chemotherapy options. Patients with incurable cancer harbor markedly optimistic expectations of prognosis, and often receive palliative chemotherapy without appreciating that it is unlikely to cure. Such misconceptions have been linked to preference for intensive care, lack of advance care planning, underutilization of hospice and greater intensity of EOL care. These markers of poor quality EOL care cause excess suffering for patients and their bereaved caregivers, without objective benefit. Nevertheless, interventions to enhance advanced cancer patients' prognostic understanding are few and underdeveloped. Prior to starting treatment, oncologists typically discuss the risks and benefits of chemotherapy and patients are required to sign written informed consent. This proposal capitalizes on the chemotherapy informed consent (IC) process as a strategic opportunity to equip patients with a better understanding of their illness and treatment options. Building upon her pilot work, in Aim 1) Dr. Enzinger will develop a suite of videos and companion booklets to support IC for advanced pancreatic cancer chemotherapy, which attend to the prognostic information needs identified by patients and caregivers in focus group testing. IC videos will present evidence-based information about chemotherapy risks and benefits, offer context about pancreatic cancer and its prognosis, and feature patients sharing their experiences.
In Aims 2 & 3) a pilot randomized trial will evaluate the impact of the intervention on patients' understanding of prognosis and chemotherapy benefits, on processes central to EOL care quality (e.g. advance care planning), and subsequent intensity and quality of EOL care. This intervention is practical, scalable and has immense potential to positively impact the quality of care provided to patients with advanced cancer. This research will facilitate training in three areas vital to the candidate' career goals: health communications, socio-behavioral research, and statistics, in which she has planned rigorous coursework. Dr. Enzinger has two highly qualified and committed mentors: Dr. Deb Schrag, a renowned researcher in cancer care delivery, and Dr. Holly Prigerson, a leader in end-of-life socio-behavioral research. Her advisory panel has deep and varied expertise in health communications, qualitative research, psychometrics, and socio-behavioral interventions. Dr. Enzinger's position as a health services researcher, medical oncologist and palliative care physician at Dana-Farber Cancer Institute likewise offer an ideal environment to support her career. In sum, the proposed research and career development plan will position the candidate to meet her study aims, garner future R01 funding for a definitive study of her intervention, and help launch her career as an independent investigator dedicated to enhancing EOL cancer care by developing and implementing novel communication interventions.
Patients with incurable cancer are often poorly informed of their prognosis and the likely benefits of chemotherapy. This lack of information prevents patients from being meaningfully engaged in their care and impedes end-of-life planning. Here we propose developing a novel, patient-centered video intervention to better inform patients with advanced pancreatic cancer about prognosis and the risk/benefit tradeoffs of their chemotherapy options. We will then test whether this intervention enhances patients' prognostic understanding, facilitates end-of-life planning, and improves quality of care patients receive at end-of-life.
|Enzinger, Andrea C; Wind, Jennifer K; Frank, Elizabeth et al. (2017) A stakeholder-driven approach to improve the informed consent process for palliative chemotherapy. Patient Educ Couns 100:1527-1536|
|Mitchell, Christine M; Epstein-Peterson, Zachary D; Bandini, Julia et al. (2016) Developing a Medical School Curriculum for Psychological, Moral, and Spiritual Wellness: Student and Faculty Perspectives. J Pain Symptom Manage 52:727-736|