OBJECTIVES Dementia is a progressive incurable life-limiting illness. Previous research suggests end-of-life care for people with dementia should have a symptomatic focus with an effort to avoid burdensome interventions that would not improve quality of life. This study aims to assess the appropriateness of end-of-life care in people who died with dementia in Belgium and to establish relative performance standards by measuring validated population-level quality indicators. DESIGN We conducted a retrospective observational study. SETTING AND PARTICIPANTS We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively collected population-level databases was linked. MEASURES We used a validated set of 28 quality indicators for end-of-life dementia care. We compared quality indicator scores across 14 healthcare regions to establish relative benchmarks. RESULTS In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate end-of-life care, people who died with dementia had on average 1.83 contacts with their family physician in the last week before death, whereas 68.4% died at home or in their nursing home of residence. For indicators of inappropriate end-of-life care, 32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days, emergency department admission varied between 19% and 31%, dispensing of gastric protectors between 18% and 42%, and antihypertensives between 40% and 53% between healthcare regions, with at least 25% of health regions below 46%. CONCLUSIONS AND IMPLICATIONS Our study found indications of appropriate as well as inappropriate end-of-life care in people with dementia, including high rates of family physician contact, as well as high percentages of diagnostic testing, and emergency department and hospital admissions. We also found high risk-adjusted variation for multiple quality indicators, indicating opportunity for quality improvement in end-of-life dementia care.

中文翻译：

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老年痴呆症患者临终关怀的适当性：在链接的行政数据库上应用质量指标

目的 痴呆症是一种进行性的、无法治愈的限制生命的疾病。先前的研究表明，痴呆症患者的临终关怀应以症状为重点，努力避免无法改善生活质量的繁重干预措施。本研究旨在评估比利时痴呆症患者临终关怀的适当性，并通过衡量经过验证的人口水平质量指标来建立相对绩效标准。设计 我们进行了一项回顾性观察研究。地点和参与者 我们纳入了 2015 年在比利时所有死于痴呆症的人。链接了来自 8 个行政收集的人口级别数据库的数据。措施 我们使用了一套经过验证的 28 项质量指标，用于临终痴呆症护理。我们比较了 14 个医疗保健地区的质量指标得分，以建立相关基准。结果 2015 年，比利时有 10,629 人死于痴呆症。对于适当的临终护理指标，患有痴呆症的人在死亡前的最后一周与家庭医生平均接触了 1.83 次，而 68.4% 的人死于家中或居住的疗养院。对于不适当的临终关怀指标，32.4% 的人在死亡前的最后 30 天内入院，36.3% 的人接受了诊断测试，而 25.1% 的人在医院死亡。在过去 30 天内，医疗保健区域之间急诊科入院率在 19% 和 31% 之间变化，胃保护剂分配在 18% 和 42% 之间，抗高血压药物在 40% 和 53% 之间变化，至少有 25% 的卫生区域低于 46 %。结论和意义 我们的研究发现了痴呆症患者临终关怀适当和不适当的迹象，包括家庭医生联系率高、诊断测试率高、急诊科和住院率高。我们还发现多个质量指标的高风险调整变异，表明有机会提高临终痴呆症护理的质量。