Identifying Correlates of Symptom Burden Experienced by Home Hospice Patients and its Association with Patient and Caregiver Outcomes

项目摘要 临终关怀对许多老年人在生命末期（EoL）发挥着越来越重要的作用，45%的老年人 美国临终关怀中的死亡（1）。症状负担是EoL护理中的常见问题， 普遍存在，预示着较差的生活质量，并且在患者生命的最后几天可能会升级（2-9）;然而， 关注EoL症状负担的现有文献主要是描述性的（4、5、10、11）。具体 本研究的目的是：（1）确定家庭临终关怀患者所经历的症状负担的相关因素， 在病人、照顾者和临终关怀水平上的EoL，（2）评估症状负担与 在EoL和三个具体的质量措施（即，住院治疗， 照顾者满意度，EoL护理质量）;（3）定义家庭临终关怀人群中的“症状危机”。的 该项目的目标将通过威尔之间强大的学术社区机构伙伴关系来实现 康奈尔老年病和姑息医学部和纽约临终关怀医院的访问护士服务， 姑息治疗。将进行一项横断面研究，以测量接受治疗的患者的症状负担。 家庭临终关怀，通过采访他们的非正式照顾者。症状负担的相关因素为 通过分析患者、护理人员和临终关怀级别属性来识别。症状之间的关联 将对负担、住院和护理质量结果进行衡量。此外，“症状”定义 危机”将通过使用扎根理论和概念图的定性方法来实现， 根据非正式护理人员和家庭临终关怀提供者小组的意见。该项目包括 非正式护理人员沿着的信息和见解，以及临终关怀和患者水平数据， 全面了解症状负担;这将为制定、实施和 评估未来的干预措施，旨在可衡量地减少症状负担和症状危机 老年人在EoL的经历。该项目也将是第一个使用多方面方法的项目， 结合非正式护理人员和临终关怀提供者的观点，创建“症状”的定义 危机”，这是家庭临终关怀中常用的一个术语，对护理质量有潜在影响。它将设置一个 在研究安宁疗护领域的“症状危机”时，对未来如何进行研究提出了新的标准。 这一贡献将是重大的，因为它有望推动家庭临终关怀领域的发展， 提供了一个更全面的了解症状负担和症状危机所经历的 老年人在临终关怀中心

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.