Sampson Elizabeth L, Thuné-Boyle Ingela, Kukkastenvehmas Riitta, Jones Louise, Tookman Adrian, King Michael, Blanchard Martin R
Marie Curie Palliative Care Research Unit, Department of Mental Health Sciences, Royal Free and University Medical School, London, UK.
BMC Palliat Care. 2008 Jul 11;7:8. doi: 10.1186/1472-684X-7-8.
There is increasing interest in improving the quality of care that patients with advanced dementia receive when they are dying. Our understanding of the palliative care needs of these patients and the natural history of advanced disease is limited. Many people with advanced dementia have unplanned emergency admissions to the acute hospital; this is a critical event: half will die within 6 months. These patients have complex needs but often lack capacity to express their wishes. Often carers are expected to make decisions. Advance care planning discussions are rarely performed, despite potential benefits such more consistent supportive healthcare, a reduction in emergency admissions to the acute hospital and better resolution of carer bereavement.
DESIGN/METHODS: We have used the MRC complex interventions framework, a "bottom-up" methodology, to develop an intervention for patients with advanced dementia and their carers aiming to 1) define end of life care needs for both patients and carers, 2) pilot a palliative care intervention and 3) produce a framework for advance care planning for patients.The results of qualitative phase 1 work, which involved interviews with carers, hospital and primary care staff from a range of disciplines, have been used to identify key barriers and challenges. For the exploratory trial, 40 patients will be recruited to each of the control and intervention groups. The intervention will be delivered by a nurse specialist. We shall investigate and develop methodology for a phase 3 randomised controlled trial. For example we shall explore the feasibility of randomisation, how best to optimise recruitment, decide on appropriate outcomes and obtain data for power calculations. We will evaluate whether the intervention is pragmatic, feasible and deliverable on acute hospital wards and test model fidelity and its acceptability to carers, patients and staff.
Results of qualitative phase 1 work suggested that carers and staff were keen to discuss these issues and guided the development of the intervention and choice of outcomes. This will be vital in moving to a phase III trial that is pragmatic and feasible for these complex patients within the NHS.
ISRCTN03330837.
提高晚期痴呆患者临终时所接受护理质量的关注度日益增加。我们对这些患者的姑息治疗需求以及晚期疾病自然史的了解有限。许多晚期痴呆患者会意外紧急入院至急症医院；这是一个关键事件：其中半数患者会在6个月内死亡。这些患者有复杂的需求，但往往缺乏表达意愿的能力。通常期望护理人员做出决策。尽管预先护理计划讨论有潜在益处，如更持续的支持性医疗保健、减少急症医院的紧急入院情况以及更好地解决护理人员的丧亲之痛，但此类讨论很少进行。
设计/方法：我们采用了医学研究委员会的复杂干预框架，一种“自下而上”的方法，为晚期痴呆患者及其护理人员开发一种干预措施，旨在1）确定患者和护理人员的临终护理需求，2）试行姑息治疗干预措施，3）为患者制定预先护理计划框架。定性阶段1工作的结果，包括对来自一系列学科的护理人员、医院和初级保健工作人员的访谈，已用于确定关键障碍和挑战。对于探索性试验，将在对照组和干预组各招募40名患者。干预措施将由一名专科护士实施。我们将研究并开发用于第3阶段随机对照试验的方法。例如，我们将探索随机化的可行性、如何最好地优化招募、确定合适的结果并获取用于功效计算的数据。我们将评估该干预措施在急症医院病房是否实用、可行且可实施，并测试模式保真度及其对护理人员、患者和工作人员的可接受性。
定性阶段1工作的结果表明，护理人员和工作人员热衷于讨论这些问题，并指导了干预措施的开发和结果的选择。这对于转向一项对英国国家医疗服务体系内这些复杂患者实用且可行第III阶段试验至关重要。
ISRCTN03330837
