Triggered Palliative Care for Advanced Dementia: A Pilot Study

 描述（由申请人提供） 痴呆症是三分之一死亡的原因，也是唯一没有有效预防或治疗的主要死亡原因。有一百万美国人患有晚期痴呆症，其特征是无法识别家庭，说话稀疏，以及对所有活动的依赖。 日常生活中位生存期为1.3年，6个月死亡率为25%。痴呆症患者生命的最后一年的特点是因急性并发症住院--肺炎和其他感染、脱水、营养不良、福尔斯和骨折。急性疾病会给患者带来症状困扰，给家庭护理人员带来情绪和经济压力。这些疾病也与明年的高死亡风险有关，并提出了有关医疗目标的伦理问题。姑息治疗咨询改善了晚期癌症和危重病患者的预后，但从未对晚期痴呆症进行过严格的测试。需要针对痴呆症的姑息治疗，以解决与这种疾病相关的独特症状和治疗决策。因此，我们建议开发和试点测试晚期痴呆症患者的姑息治疗咨询模型，引发住院治疗的严重急性疾病。患者将与其家庭决策者（N=60对）一起入组随机可行性试验。干预二人组将在入院期间接受专业姑息治疗咨询，再加上出院后由其门诊初级保健提供者和姑息治疗执业护士进行的协作治疗。对照组将接受常规护理。我们的研究目标是为一项大型多中心随机对照试验（RCT）生成初步数据，该试验应用于NIA（PA-13-354推进老年姑息治疗科学）中晚期痴呆症的协作姑息治疗模型。本申请的具体目标是：目标1：开发一个最佳实践模式的协作姑息治疗晚期痴呆症入院严重急性疾病。目标二：开展一项针对晚期痴呆的协作姑息治疗（与常规治疗相比）的试点随机试验，以证明开展更大规模RCT的可行性，并估计效应量，为更大规模RCT提供信息。主要结局将是出院后30天内的转院次数（急诊室或住院）。在出院和30天随访时测量的次要结局将包括护理计划中的姑息治疗领域数量、临终关怀转诊、POLST（维持生命治疗医嘱）表填写情况、不再再次住院的决定和负担沉重的治疗。

 DESCRIPTION (provided by applicant) Dementia is a contributing cause for 1 in 3 deaths, and is the only major cause of death with no effective prevention or treatment. One million Americans have advanced dementia, characterized by inability to recognize family, sparse speech, and dependency for all activities of daily living. Median survival is 1.3 years, and 6-month mortality is 25%. The final year of life wih dementia is characterized by hospitalizations for acute complications -- pneumonia and other infections, dehydration, malnutrition, falls and fractures. Acute illnesses cause symptom distress for patients, with emotional and financial strain for family caregivers. These illnesses are also associated with a high risk of death in the next year and raise ethical questions about goals of medical treatment. Palliative care consultation improves outcomes for patients with advanced cancer and critical illness, but has never been rigorously tested for advanced dementia. Dementia-specific palliative care is needed to address the unique symptoms and treatment decisions relevant to this disease. We therefore propose to develop and pilot test a model of palliative care consultation for advanced dementia patients, triggered by hospitalization for a serious acute illness. Patients will be enrolled with their family decision-makers (N=60 dyads) in a randomized feasibility trial. Intervention dyads will receive specialty palliative care consultaton during hospital admission, plus post-discharge collaborative care by their outpatient primary care provider and a palliative care nurse practitioner. Control dyads will receive usual care. Our research objective is to generate preliminary data for a large multi-site randomized controlled trial (RCT) of a model of collaborative palliative care for advanced dementia in an application to NIA (PA-13-354 Advancing the Science of Geriatric Palliative Care). Our specific aims for this application are: Aim 1: To develop a best-practice model of collaborative palliative care for advanced dementia triggered by hospital admission for serious acute illness. Aim 2: To conduct a pilot randomized trial of collaborative palliative care for advanced dementia (versus usual care) to demonstrate the feasibility of conducting a larger RCT and to estimate effect sizes to inform the larger RCT. The primary outcome will be number of hospital transfers (emergency room or hospital admission) in the 30 days post discharge. Secondary outcomes, measured at hospital discharge and 30 days follow-up, will include number of palliative care domains in the care plan, hospice referral, POLST (Physician Orders for Life- Sustaining Treatment) form completion, decision not to re-hospitalize, and burdensome treatments.