Community-Generated Palliative Care Telemedicine for Rural Black and White Elders

描述(由申请人提供)：社区生成的农村黑人和白人老年人姑息治疗计划和咨询被证明可以减少症状，减轻痛苦，提高家庭满意度，增强护理的有效性，1-6，并与医院成本节省有关。7-9美国有些地区没有姑息治疗，特别是在美国南部的农村地区。10-12远程医疗越来越多地被用于为各种疾病提供医疗保健，13-17，但在美国只有一项远程医疗姑息治疗计划的随机临床试验。18南卡罗来纳州75%的人口是农村，33%的居民居住在贫穷和失业率高、人均收入低的农村地区。20非洲裔美国人占南卡罗来纳州农村人口的28%。21农村居民在健康结果和获得保健方面存在差异。显著更多的非裔美国人选择维持生命的治疗而不考虑预后，23-25岁的人有强烈的精神信仰，认为命运掌握在上帝的手中，25-26人，并选择将家庭成员和宗教领袖纳入决策过程。12，27-29考虑到农村绝症患者及其家庭照顾者的文化偏好的姑息治疗模式12，27-29 目前在美国不可用。这项拟议的研究将首次使用基于社区的参与研究(CBPR)30-33来设计和测试通过远程医疗为非裔美国人(AA)和白人(W)农村老年人及其家人提供的姑息关怀(PC)咨询计划的可行性、可接受性和短期有效性。具体目标包括：1.为60岁及以上面临绝症的AA和W住院患者开发PC咨询试点计划。这将基于个人电脑原则，以及最近完成的焦点小组(其亲人最近去世的AA和W家庭成员)产生的关于临终关怀偏好的主题。该计划将与社区咨询小组(来自焦点小组的AA和W代表)合作制定。2.评估试点计划的可行性、可接受性和短期效果，对临终关怀(主要)和ICU转诊和住院(次要)结果的满意度。项目成果将用于制定一项随机对照试验，以测试远程医疗PC方案在加强对农村AA和W老年人及其家人的临终关怀方面的有效性。

DESCRIPTION (provided by applicant): Community-Generated Palliative Care Telemedicine for Rural Black and White Elders Palliative care programs and consultations have both been shown to reduce symptoms, alleviate suffering, improve family satisfaction, enhance effectiveness of care,1-6 and are associated with hospital cost savings.7-9 There are areas in the US where palliative care is not available, especially in rural areas of the Southern United States.10-12 Telemedicine is increasingly used to deliver health care for a variety of illnesses,13-17 but there has been only one randomized clinical trial of a telemedicine palliative care program in the US.3,4,18 Seventy five percent of South Carolina (SC) is rural, and 33 percent of its residents reside in rural areas19 where poverty and unemployment rates are high, and per capita income is low.20 African Americans comprise 28 percent of those who live in rural SC.21 Rural residents experience disparities in health outcomes and health care access.22 Previous studies of urban patients indicate that race, ethnicity and culture strongly influence end of life-sustaining measures. Significantly more African Americans choose life-sustaining therapies regardless of prognosis,23-25 have strong spiritual beliefs that fate is in God's hands,25,26 and choose to include family members and religious leaders in the decision-making process.12,27-29 Culturally appropriate models of palliative care that take into consideration cultural preferences of terminally ill rural patients and their family caregivers are not currently available in the US. The proposed study will be the first to use Community Based Participatory Research (CBPR)30-33 to design and test the feasibility, acceptability and short-term effectiveness of a palliative care (PC) consult program delivered via telemedicine for African American (AA) and White (W) rural elders and their families. Specific Aims include: 1. Develop a pilot PC consult program for AA and W inpatients aged 60 and over facing a terminal illness. This will be based on PC principles, and themes on end of life care preferences that emerged from recently completed focus groups (AA and W family members whose loved one had recently passed away). The program will be developed in collaboration with a Community Advisory Group (AA and W representatives from the focus groups.) 2. Assess pilot program's feasibility, acceptability, and short-term effectiveness on satisfaction with end of life care (primary) and ICU referrals and hospitalizations (secondary) outcomes. Project outcomes will be used to develop an RCT to test the effectiveness of a telemedicine PC program in enhancing end of life care for rural AA and W elders and their families.