Marie Curie Palliative Care Research Unit, UCL Mental Health Sciences Unit, University College London Medical School, London, UK.
BMJ Open. 2012 Nov 27;2(6). doi: 10.1136/bmjopen-2012-002265. Print 2012.
Approximately 700 000 people in the UK have dementia, rising to 1.2 million by 2050; one-third of people aged over 65 will die with dementia. Good end-of-life care is often neglected, and detailed UK-based research on symptom burden and needs is lacking. Our project examines these issues from multiple perspectives using a rigorous and innovative design, collecting data which will inform the development of pragmatic interventions to improve care.
To define in detail symptom burden, service provision and factors affecting care pathways we shall use mixed methods: prospective cohort studies of people with advanced dementia and their carers; workshops and interactive interviews with health professionals and carers, and a workshop with people with early stage dementia. Interim analyses of cohort data will inform new scenarios for workshops and interviews. Final analysis will include cohort demographics, the symptom burden and health service use over the follow-up period. We shall explore the level and nature of unmet needs, describing how comfort and quality of life change over time and differences between those living in care homes and those remaining in their own homes. Data from workshops and interviews will be analysed for thematic content assisted by textual grouping software. Findings will inform the development of a complex intervention in the next phase of the research programme.
Ethical approval was granted by National Health Service ethical committees for studies involving people with dementia and carers (REC refs. 12/EE/0003; 12/LO/0346), and by university ethics committee for work with healthcare professionals (REC ref. 3578/001). We shall present our findings at conferences, and in peer-reviewed journals, prepare detailed reports for organisations involved with end-of-life care and dementia, publicising results on the Marie Curie website. A summary of the research will be provided to participants if requested.
英国约有 70 万人患有痴呆症，到 2050 年将上升至 120 万人；三分之一的 65 岁以上老年人将死于痴呆症。临终关怀往往被忽视，而且缺乏基于英国的详细症状负担和需求研究。我们的项目从多个角度使用严格和创新的设计来研究这些问题，收集的数据将为制定切实可行的干预措施以改善护理提供信息。
为了详细定义症状负担、服务提供以及影响护理途径的因素，我们将使用混合方法：对患有晚期痴呆症的患者及其照顾者进行前瞻性队列研究；与卫生专业人员和照顾者进行研讨会和互动式访谈，以及与早期痴呆症患者进行研讨会。队列数据的中期分析将为研讨会和访谈提供新的情景。最终分析将包括队列的人口统计学特征、随访期间的症状负担和卫生服务使用情况。我们将探索未满足需求的程度和性质，描述随着时间的推移舒适度和生活质量的变化，以及居住在护理院和自己家中的人的差异。研讨会和访谈的数据将通过文本分组软件进行主题内容分析。研究结果将为下一阶段的研究计划中的复杂干预措施的制定提供信息。
涉及痴呆症患者和照顾者的研究获得了国家卫生服务伦理委员会的伦理批准（REC 参考文献 12/EE/0003；12/LO/0346），以及涉及医疗保健专业人员的大学伦理委员会的批准（REC 参考文献 3578/001）。我们将在会议和同行评议期刊上展示我们的研究结果，为参与临终关怀和痴呆症的组织编写详细报告，在 Marie Curie 网站上宣传研究结果。如果需要，将向参与者提供研究摘要。
