Tabatabaei-Jafari Hossein, Bagheri Nasser, Lueck Christian, Furst Mary Anne, Salinas-Perez Jose A, Salvador-Carulla Luis
From the Mental Health Policy Unit, Health Research Institute, Faculty of Health, University of Canberra, Canberra, ACT, Australia (HT-J, NB, MAF, JAS, LS-C).
Department of Neurology, Canberra Hospital, Canberra, ACT, Australia (CL).
Int J MS Care. 2023 May-Jun;25(3):124-130. doi: 10.7224/1537-2073.2022-014. Epub 2022 Dec 13.
This study evaluates and describes the pattern of services provided for people living with multiple sclerosis (MS) in a local area as a starting point for a more global assessment.
A health care ecosystem approach has been followed using an internationally standardized service classification instrument-the Description and Evaluation of Services and DirectoriEs for Long Term Care (DESDE-LTC)-to identify and describe all services providing care to people with MS in the Australian Capital Territory, Australia. Available services were classified according to the target population into those specifically dedicated to people living with MS and those providing general neurologic services, both public and private, and across both social and health sectors.
A limited range of services was available. There were no local facilities providing or coordinating multidisciplinary integrated care specific to people with MS. Subspecialty services specific to MS were limited in number (6 of the 28 services), and use of specialist services provided in neighboring states was frequently reported. Overall, very few services were provided outside the core health sector (4%).
The provision of care to people living with MS in the Australian Capital Territory is fragmented and relies heavily on generic neurology services in the public and private sectors. More widespread use of the DESDE-LTC as a standardized method of service classification in MS will facilitate comparison with other local areas, allow monitoring of changes over time, and permit comparison with services provided for other health conditions (eg, dementia, mental disorders).
本研究评估并描述了当地为多发性硬化症（MS）患者提供的服务模式，作为更全面评估的起点。
采用了一种医疗保健生态系统方法，使用国际标准化的服务分类工具——长期护理服务描述与评估及目录（DESDE-LTC），以识别和描述澳大利亚首都地区为MS患者提供护理的所有服务。现有服务根据目标人群分为专门为MS患者提供的服务以及提供公共和私人、社会和卫生部门的一般神经科服务。
可用服务范围有限。没有当地设施提供或协调针对MS患者的多学科综合护理。特定于MS的专科服务数量有限（28项服务中的6项），并且经常报告使用邻近州提供的专科服务。总体而言，核心卫生部门以外提供的服务非常少（4%）。
澳大利亚首都地区为MS患者提供的护理是分散的，严重依赖公共和私营部门的一般神经科服务。更广泛地使用DESDE-LTC作为MS服务分类的标准化方法将有助于与其他地区进行比较，允许监测随时间的变化，并允许与为其他健康状况（如痴呆症、精神障碍）提供的服务进行比较。
