Standardized Systematic Description of Provision of Care for Multiple Sclerosis at a Local Level: A Demonstration Study

Abstract

Background: 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. Methods: 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. Results: 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%). Conclusions: 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).

The Integrated Atlas of Dementia Care in the Australian Capital Territory: A Collective Case Study of Local Service Provision

“…Our previous research on care provision for various conditions such as mental health, chronic care, Multiple Sclerosis, and disabilities indicates the importance of a separate analysis of specialised services and those general services that also cater to the target population. 21 , 22 , 40 In the case of dementia, we have identified a significant proportion of general services with a substantial case load of people with dementia. This finding prompted us to include general services with over 50% and those with over 20% case load of dementia.…”

“… 18 , 19 The integrated Atlases of Health collect detailed local information from local service managers in a ‘bottom-up’ approach, and use Geographic Information Systems (GIS) to map the local socioeconomic and demographic context and geolocate service distribution. Following the approach previously used to map local provision in mental health, 14 , 20 multiple sclerosis, 21 and chronic care. 22 An Integrated Atlas of Dementia Services could provide essential information on service availability, care capacity, social and demographic characteristics, and health-related needs, allowing policy planners and decision-makers to assess the strengths and gaps in the healthcare system and make informed decisions.…”