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

Hossein Tabatabaei-Jafari; Nasser Bagheri; Christian Lueck; Mary Anne Furst; Jose A Salinas-Perez; Luis Salvador-Carulla

doi:10.7224/1537-2073.2022-014

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

Int J MS Care. 2023 May-Jun;25(3):124-130. doi: 10.7224/1537-2073.2022-014. Epub 2022 Dec 13.

Authors

Hossein Tabatabaei-Jafari¹, Nasser Bagheri¹, Christian Lueck^{1

2

3}, Mary Anne Furst¹, Jose A Salinas-Perez^{1

4}, Luis Salvador-Carulla^{1

5}

Affiliations

¹ 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).
² Department of Neurology, Canberra Hospital, Canberra, ACT, Australia (CL).
³ Australian National University Medical School, Canberra, ACT, Australia (CL).
⁴ Department of Quantitative Methods, Loyola University Andalucia, Seville, Spain (JAS-P).
⁵ Menzies Centre for Health Policy, School of Public Health, Faculty of Medicine and Health, University of Sydney, Sydney, NSW, Australia (LS-C).

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).

Keywords: DESDE-LTC; health care system; multiple sclerosis; service mapping.

Grants and funding

FUNDING/SUPPORT: This work was funded by an Incubator Grant from MS Research Australia (application number: 19–0656) and was supported by OHIOH, a strategic initiative of the Australian National University created in partnership with ACT Health.