Neurology. Clinical practice · 2026
The AIMS Clinic Model: A Retrospective Analysis of Interdisciplinary Movement-Neuropalliative Care for People With Late-Stage Parkinsonism.
СтатьяНазвание и аннотация: Перевод в очереди
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Husain Mariya, Hong Angela, Tharp Marla E, Chen Yuqing, Naveed Aamina, Kee Sarah, Shankar Deepa H, Chen Sarah Mitchell, Hong Grace, Gustashaw Kristin A, Ouyang Bichun, Kramer Neha M, Fleisher Jori E
Аннотация
BACKGROUND AND OBJECTIVES: Patients with late-stage parkinsonism face complex, progressive symptoms requiring specialized interdisciplinary care, yet the unique needs of these patients and family care partners are often inadequately addressed in standard neurology practice. Evidence supporting innovative palliative care models for late-stage movement disorders remains limited. Although interdisciplinary movement-palliative clinics have expanded over the past decade, many provide consultation-only services, lack longitudinal follow-up, meet infrequently, or face sustainability challenges. We describe the Advanced Interdisciplinary Movement Disorders Supportive Care (AIMS) clinic, established in 2019, which delivers both consultative and longitudinal follow-up care tailored to meet the unique needs of this patient population.
METHODS: We describe the structure, workflow, and services of the AIMS clinic and present a retrospective review of patients seen between 2019 and 2023. Charts were systematically revied with relevant data extracted from documentation by the team, comprised of a movement disorders neurologist and fellows, neuropalliative care specialist, social worker, dietitian, and nurse. Data analyzed included demographics, initial and revised diagnoses, quality-of-life measures, morbidity, place of death, and hospice utilization at the time of death.
RESULTS: Among 175 consecutive patients seen between 2019 and 2023 (568 total visits), 78.7% were White; 57.7% male, with an average age of 72.8 (SD 11.9) years; and 97.5% were accompanied by a care partner. The most common diagnoses were Parkinson disease (42.3%), dementia with Lewy bodies (17.1%), and multiple system atrophy (12.6%). The median time from symptom onset to initial AIMS clinic visit was 7 years (range 1.0-31.0). Among 58 deceased patients, 40 (69.0%) were enrolled in hospice at the time of death.
DISCUSSION: This clinic highlights the feasibility and value of a longitudinal, outpatient interdisciplinary movement-neuropalliative care model for individuals living with late-stage parkinsonism-a group that is frequently lost to follow-up in traditional care pathways. Nearly 200 patients with late-stage disease were engaged in sustained care, and hospice utilization at the time of death substantially exceeded rates reported in usual care. Forthcoming analyses of symptom burden, quality-of-life trajectories, and end-of-life care will further inform best practices for comprehensive management in late-stage parkinsonism care.
METHODS: We describe the structure, workflow, and services of the AIMS clinic and present a retrospective review of patients seen between 2019 and 2023. Charts were systematically revied with relevant data extracted from documentation by the team, comprised of a movement disorders neurologist and fellows, neuropalliative care specialist, social worker, dietitian, and nurse. Data analyzed included demographics, initial and revised diagnoses, quality-of-life measures, morbidity, place of death, and hospice utilization at the time of death.
RESULTS: Among 175 consecutive patients seen between 2019 and 2023 (568 total visits), 78.7% were White; 57.7% male, with an average age of 72.8 (SD 11.9) years; and 97.5% were accompanied by a care partner. The most common diagnoses were Parkinson disease (42.3%), dementia with Lewy bodies (17.1%), and multiple system atrophy (12.6%). The median time from symptom onset to initial AIMS clinic visit was 7 years (range 1.0-31.0). Among 58 deceased patients, 40 (69.0%) were enrolled in hospice at the time of death.
DISCUSSION: This clinic highlights the feasibility and value of a longitudinal, outpatient interdisciplinary movement-neuropalliative care model for individuals living with late-stage parkinsonism-a group that is frequently lost to follow-up in traditional care pathways. Nearly 200 patients with late-stage disease were engaged in sustained care, and hospice utilization at the time of death substantially exceeded rates reported in usual care. Forthcoming analyses of symptom burden, quality-of-life trajectories, and end-of-life care will further inform best practices for comprehensive management in late-stage parkinsonism care.