Schmidt Richard, Slotina Ekaterina, Meissner Franziska, Metelmann Moritz, Ilse Benjamin, Vogt Verena, Freytag Antje
University Hospital Jena, Institute of General Practice and Family Medicine, Friedrich Schiller University Jena, Jena, Germany.
Leipzig University, Faculty of Medicine, Department of Neurology, Leipzig, Germany.
BMC Palliat Care. 2025 Jul 14;24(1):200. doi: 10.1186/s12904-025-01843-x.
Amyotrophic lateral sclerosis is a progressive neurodegenerative disease requiring palliative care. Despite the availability of palliative care services, utilization patterns among people with ALS (pALS) remain poorly understood. This study aimed to analyze palliative care utilization (i.e., primary palliative care (PPC), specialized palliative homecare (SPHC), inpatient palliative care, hospice services) in the last year of life among pALS, to identify distinct care pathways using sequence analysis, and examine their association with end-of-life care quality.
A retrospective cross-sectional study using German health claims data (2016 - 2019). Sequence analysis with Temporal Needleman-Wunsch alignment and clustering identified pathway clusters based on type, order, and timing of palliative care services. The study included 1,295 pALS who died between 2016 and 2019 and were insured with a large German health insurance provider. Inclusion required an ALS diagnosis without concurrent cancer.
Of 1,295 pALS, 695 (53.7%) received palliative care. Sequence analysis identified nine distinct care pathway clusters. Quality indicators varied highly across clusters. Pathways involving SPHC, either alone, with PPC, and/or with hospice care, showed fewer emergency visits, hospital stays, and in-hospital deaths, suggesting higher end-of-life care quality.
Palliative care utilization varies substantially in type, order, and timing. Findings suggest that end-of-life care quality depends not only on the provision of palliative care but also on when and on how different services are combined. Future research should examine the role of interdisciplinary collaboration in palliative care pathways and explore preferences and clinical characteristics of pALS to better understand factors influencing end-of-life care quality.
肌萎缩侧索硬化症是一种需要姑息治疗的进行性神经退行性疾病。尽管有姑息治疗服务，但肌萎缩侧索硬化症患者（pALS）的服务利用模式仍知之甚少。本研究旨在分析pALS生命最后一年的姑息治疗利用情况（即初级姑息治疗（PPC）、专科姑息家庭护理（SPHC）、住院姑息治疗、临终关怀服务），通过序列分析确定不同的护理途径，并研究它们与临终护理质量的关联。
一项使用德国健康保险数据（2016 - 2019年）的回顾性横断面研究。采用时间Needleman-Wunsch比对和聚类的序列分析，根据姑息治疗服务的类型、顺序和时间确定途径聚类。该研究纳入了1295例在2016年至2019年间死亡且由德国一家大型健康保险提供商承保的pALS患者。纳入标准要求诊断为ALS且无并发癌症。
在1295例pALS患者中，695例（53.7%）接受了姑息治疗。序列分析确定了九个不同的护理途径聚类。各聚类的质量指标差异很大。涉及SPHC的途径，无论是单独使用、与PPC联合使用，还是与临终关怀护理联合使用，都显示出较少的急诊就诊、住院次数和院内死亡，表明临终护理质量较高。
姑息治疗的利用在类型、顺序和时间上有很大差异。研究结果表明，临终护理质量不仅取决于姑息治疗的提供，还取决于不同服务的组合时间和方式。未来的研究应探讨跨学科协作在姑息治疗途径中的作用，并探索pALS的偏好和临床特征，以更好地理解影响临终护理质量的因素。
