Authors (including presenting author) :
Chung WK(1), Cheng HWB(1), Chan KP(1), Hsu DY(1), Ma YKS(1), Chan LY(1), Ng SH(1), Chow SL(1), Hong YF(1), Chan YHJ(1), Ma YK(1), Lee S(1), Lui WC(1), Chan OM(1), Chan CH(2), Hwang LM(2), Lee A(2), Cheung KW(2), Wong PL(2), Wong WT(2), Ng YK(2), Fung PS(2), Chan WY(2), Chan KW(2), Au YT(2), Law TK(2), Kwok NS(2), Chan YT(2), Chan MNM(3), Fung W(3)
Affiliation :
(1)Department of Medicine & Geriatrics, Tuen Mun Hospital
(2)Palliative Home Care Team, New Territories West Cluster
(3)JCECC: “Hospice in Family” Home Care Support Services, Hospice and Bereavement Service Division, S.K.H. Holy Carpenter Church District Elderly Community Centre
Keyword 1: :
motor neuron disease
Keyword 2: :
amyotrophic lateral sclerosis
Keyword 3: :
multidisciplinary care
Keyword 4: :
neuro-palliative care
Keyword 5: :
advance care planning
Keyword 6: :
advance medical directive
Introduction :
Motor neuron disease (MND) is a group of incurable multisystem neurodegenerative diseases which bring multi-facet impact to patients and their caregivers. International guidelines have highlighted the importance of multidisciplinary neuro-palliative care to better address their needs, yet the best model of practice has not been well-defined. An MND taskforce has been established in NTWC hospitals since 2011 to provide coordinated interdisciplinary care to patients.
Objectives :
(1)To describe the palliative care service delivery by a structured multidisciplinary neuro-palliative care model developed for MND patients in NTWC hospitals; (2)To evaluate the clinical outcomes of MND patients under this model of care.
Methodology :
A 10-year retrospective review of MND patients in NTWC between January 2013 and December 2022 was performed. Data of patients under care of the MND taskforce and those who were not were analyzed.
Result & Outcome :
There were 140 MND patients included in study. Patients in multidisciplinary neuro-palliative care group received more healthcare intervention and palliative care services, including occupational therapist (92.86% vs 78.57%, p=0.021), dietitian (67.35% vs 42.86%, p=0.007) and speech therapist (96.94% vs 76.19%, p=0.000) services, community support by non-governmental organizations (74.49% vs 19.05%, p=0.000) and formal bereavement support (78.26% vs 17.07%, p=0.000). Significantly more patients in multidisciplinary neuro-palliative care group had completed Advance Medical Directives (46.94% vs 4.76%, p=0.000). Patients under multidisciplinary care had longer survival compared to those who were not (HR 0.539, 95% CI 0.372–0.782, p=0.001). This remains significant after adjusting for factors affecting survival in multivariate analysis. Our multidisciplinary neuro-palliative care model demonstrated benefits to MND patients in terms of better care coordination and service delivery, higher rate of Advance Medical Directive completion, with possibly better survival observed. Future studies to assess its impact on patient-centered outcomes would be valuable.