Identifying Correlates of Symptom Burden Experienced by Home Hospice Patients and its Association with Patient and Caregiver Outcomes
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Project Summary Hospice care plays an increasingly important role for many older adults at the End-of-Life (EoL), with 45% of U.S. deaths being cared for under hospices (1). Symptom burden, a common issue in EoL care, is highly prevalent, predicts poorer quality of life, and can escalate during the last days of a patient's life (2–9); however, existing literature focused on symptom burden at the EoL has been largely descriptive (4,5,10,11). The specific aims for this project are: (1) To identify correlates of symptom burden experienced by home hospice patients at the EoL at the patient, caregiver, and hospice level, (2) To evaluate the relationship between symptom burden experienced by home hospice patients at the EoL and three specific quality measures (i.e., hospitalization, caregiver satisfaction, quality of EoL care), (3) To define “symptom crisis” in the home hospice population. The aims of this project will be achieved through a strong academic-community agency partnership between Weill Cornell Division of Geriatrics and Palliative Medicine and the Visiting Nurse Service of New York Hospice and Palliative Care. A cross-sectional study will be conducted to measure symptom burden of patients receiving home hospice care through interviews with their informal caregivers. Correlates of symptom burden will be identified through analysis of patient, caregiver, and hospice level attributes. Associations between symptom burden and hospitalization and quality of care outcomes will be measured. In addition, a definition of “symptom crisis” will be achieved by employing a qualitative approach using grounded theory and concept mapping and based on input from informal caregivers and a panel of home hospice providers. This project incorporates information and insights from informal caregivers along with hospice and patient level data that will provide a comprehensive understanding of symptom burden; this will set the stage for developing, implementing and evaluating future interventions aimed at measurably reducing symptom burden and symptom crises experienced by older adults at the EoL. This project will also be the first to use a multi-faceted approach that incorporates perspectives from informal caregivers and hospice providers to create a definition of “symptom crisis,” a term commonly used in home hospice care and with potential impact on quality of care. It will set a new standard on how future research is conducted when studying “symptom crisis” in the field of hospice care. The contribution will be significant because it is expected to propel the field of home hospice care forward by providing a more comprehensive understanding of symptom burden and symptom crisis experienced by the aging population on hospice at the EoL.
