One‐Year Clinical Course of Patients With Amyotrophic Lateral Sclerosis Admitted to a Home Palliative Care Program: An Extension Study

ABSTRACT Introduction/Aims Longer term data on ALS patients receiving home palliative care are scarce. We extended follow‐up of a 6‐month cohort to 12 months to characterize the trajectory of function, symptoms, vital support (noninvasive ventilation [NIV], gastrostomy, and/or tracheostomy), and advance care planning (ACP). Methods In this prospective, single‐center study, 34 consecutive ALS patients in a home palliative care program (SAMOT, Palermo) were assessed at baseline, 2, 4, 6, and 12 months, using Karnofsky, ALS Functional Rating Scale‐Revised (ALSFRS‐R), Edinburgh Cognitive and Behavioural ALS Screen (ECAS), Edmonton Symptom Assessment Scale (ESAS), dysphagia, vital support, and advanced care planning (ACP). Results Ten patients (29.4%) died over 12 months (70% at home); 26 completed the 12‐month assessment. Karnofsky (34.4–27.7) and ALSFRS‐R (27.1–21.7) declined significantly throughout (both p < 0.0005). Total ESAS rose from 15.7 to 23.7 ( p < 0.0005); anxiety increased significantly between T4 and T12. NIV use rose from 20.6% to 50.0% ( p = 0.014), while tracheostomy remained stable. Documented end‐of‐life decisions rose to 70.4% at 6 months but plateaued (69.2% at 12 months); no living wills were completed. Cognitive impairment on ECAS was present in about half of patients, unchanged over time. No patient was referred to or admitted to hospice. Discussion Extending follow‐up beyond 6 months shows continuous functional decline and rising symptom burden, and highlights late‐onset anxiety and early‐plateauing ACP. Despite progressive needs, this home palliative care model appeared to support most patients at home until death over 1 year, within this single‐center, non‐comparative cohort.