Palliative care pathways in Amyotrophic Lateral Sclerosis (ALS): a sequence analysis of health claims data

Abstract

Background: 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.

Methods: 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.

Results: 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.

Conclusions: 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.

Keywords: Amyotrophic lateral sclerosis; Hospice care; Palliative care; Palliative medicine; Secondary data analysis.

Fig. 1

Sequential utilization of palliative care services among people with ALS in the last year of life. Vertices represent the total number of pALS who initiated the respective type of palliative care service within the last year of life. Directed edges indicate the total number of pALS who initiated the connected types of palliative care services sequentially, following the direction of the edge. Those who initiated multiple types of palliative care services simultaneously were included in the vertex labels but not represented by directed edges: 27 pALS initiated PPC and SPHC simultaneously, 12 initiated hospice care simultaneously with PPC, and 10 initiated hospice care simultaneously with SPHC. Abbreviations: PPC, primary palliative care; SPHC, specialized palliative home care; inpatient, inpatient palliative care

Fig. 2

Temporal patterns of palliative care initiation in people with ALS across nine distinct clusters. Symbols within each cluster indicate the initiation of a specific type of palliative care service at the corresponding time point on the x-axis. Within an individual’s palliative care sequence, the color of the symbols reflects the order of care initiation: green (0) represents the most recent type of palliative care received, purple (−1) indicates the second-to-last type, and so on. If multiple types of palliative care services had been initiated on the same day, a triangle in both types marks the respective day. Abbreviations: PPC, primary palliative care; SPHC, specialized palliative home care; inpatient, inpatient palliative care