Publication

Research Article

International Journal of MS Care

6 | Volume 22

Guest Editorial - Volume 22, Issue 6 - November 2020

The RIMS (Rehabilitation in Multiple Sclerosis) network is now approaching its 30th anniversary, in 2021. It is a pleasure to look back, with so many others, to the discipline of rehabilitation in general, and developments witnessed in rehabilitation for persons with multiple sclerosis (MS).

Rehabilitation in general has evolved to an evidence-based discipline. The importance, specificity, and rigor of scientific research in rehabilitation sciences have been highlighted, relatively recently, by the establishment of the Cochrane Rehabilitation Field (see https://rehabilitation.cochrane.org/). Rehabilitation research is now also substantial in the area of MS, with evidence being summarized in a plenitude of systematic reviews on different themes.1 However, multidisciplinary and updated guidelines to guide clinicians, therapists, and health care managers are so far lacking.2 The most comprehensive formally developed guideline was published by NICE (National Institute for Health and Care Excellence), United Kingdom (see https://www.nice.org.uk/guidance/cg186), in 2014 but could benefit from more specificity. In addition, an EMSP (European Multiple Sclerosis Platform)–RIMS publication was distributed in 2012 with an expert overview (editor Thomas Henze; see https://www.eurims.org/News/recommendations-on-rehabilitation-services-for-persons-with-multiple-sclerosis-in-europe.html). Consulting the APPECO database for recent evidence is also enlightening, as addressed in an article in this theme issue of the International Journal of MS Care (IJMSC).

However, implementation of evidence in clinical practice remains a challenge. First of all, the MS Barometer of EMSP (see http://www.emsp.org/projects/ms-barometer/) illustrated that many countries lack sufficient specialized so-called tertiary care rehabilitation services for persons with MS, which limits equity of receipt of optimal rehabilitation and care. Access to specialized care was sometimes called a “regional lottery.” Also, access to primary care was often poor for persons with MS, who sometimes received the label of chronically disabled, thus relying on social welfare regulations rather than health care.

The RIMS organization was originally founded in 1991 as a network of MS centers predominantly at a tertiary care level. The European project MARCH (Multiple Sclerosis And Rehabilitation, Care and Health Services in Europe) had the mission to share clinical expertise in rehabilitation amongst specialized centers in Western and Eastern Europe, after the fall of the Berlin Wall in 1989. Yearly meetings encouraged good clinical practice and led to development of a number of booklets. The fellowship program was important for having therapists visiting other centers during internships.

Gradually, research was performed within the specialized centers, and its quality was further enhanced by collaborations with research departments of universities in different specializations. Primary care professionals also joined the network, which was encouraged given the demonstrated need for education illustrated in a survey amongst physical therapists across Europe taken about 5 years ago.3,4 As a result, in about 2012, RIMS adopted a new subtitle, being a “European network for best practice and research.” The biotope is important, particular for young people, and led to strong professionals, of whom some have contributed to this theme issue. The international journals with which RIMS is formally affiliated (IJMSC, Multiple Sclerosis Journal) are important for highlighting new findings and best practice. Also, we now notice strong initiatives such as the IMSFPRN (International MS Falls Prevention Research Network) and MoXFo (Moving Exercise Research in MS Forward) as a result of the frequent encounters within the network.5,6

Although the organization is based in Europe, RIMS is open to health care professionals and researchers from all over the world and hopes to advocate—and empower advocates, clinicians, and researchers—in different fields worldwide. The organization has therefore been in dialogue and partnerships with international society partners, such as ECTRIMS (European Committee for Treatment and Research in Multiple Sclerosis), the European Charcot Foundation, EMSP, MSIF (MS International Federation), and the CMSC (Consortium of Multiple Sclerosis Centers), and is open to any continental organization across the world, such as, but not limited to, ACTRIMS (Americas Committee for Treatment and Research in Multiple Sclerosis), LACTRIMS (Latin American Committee for Treatment and Research in Multiple Sclerosis), RUCTRIMS (Russian Committee for Treatment and Research in Multiple Sclerosis) or MENACTRIMS (Middle East North Africa Committee for Treatment and Research in Multiple Sclerosis), and the global Progressive MS Alliance.

Projects were performed, sometimes voluntarily with an institution’s own resources, sometimes with support of the small but motivational RIMS grant program, or directly by drug companies, encouraging multicenter data collection on mobility and upper limb function, discussing adherence to rehabilitation, exploring possibilities for international rehabilitation databases, establishing new intervention strategies, summarizing evidence in the electronic systems, developing guidelines as for palliative care, and other.710

The vision of RIMS is that every person with MS receives evidence-based rehabilitation when they need it. The organization still has challenges ahead in education, research, and health service advocacy, and this during challenging times requiring digital communication strategies and the need to embrace telerehabilitation innovations. These developments, now particularly required during the COVID-19 pandemic, can only assemble all like-minded professionals and organizations to partner up in the benefit of the functioning goals of persons with MS. Together, it will be achieved.

References

  1. Negrini S, Arienti C, Gimigliano F, . Cochrane Rehabilitation: organization and functioning. Am J Phys Med Rehabil. 2018; 97: 68– 71.

  2. Haselkorn JK, Hughes C, Rae-Grant A, . Summary of comprehensive systematic review: rehabilitation in multiple sclerosis: Report of the Guideline Development, Dissemination, and Implementation Subcommittee of the American Academy of Neurology. Neurology. 2015; 85: 1896– 1903.

  3. Rasova K, Martinkova P, Soler B, . Real-world goal setting and use of outcome measures according to the International Classification of Functioning, Disability and Health: a European survey of physical therapy practice in multiple sclerosis. Int J Environ Res Public Health. 2020; 17: 4774.

  4. Rasova K, Freeman J, Cattaneo D, . Content and delivery of physical therapy in multiple sclerosis across Europe: a survey. Int J Environ Res Public Health. 2020; 17: 886.

  5. Dalgas U, Hvid LG, Kwakkel G, . Moving exercise research in multiple sclerosis forward (the MoXFo initiative): developing consensus statements for research. Mult Scler. 2020; 26: 1303– 1308.

  6. Sosnoff JJ, Finlayson M. International MS Falls Prevention Research Network: report from the front lines. Int J MS Care. 2014; 16: 161– 162.

  7. Kos D, Kerckhofs E, Carrea I, Verza R, Ramos M, Jansa J. Evaluation of the Modified Fatigue Impact Scale in four different European countries. Mult Scler. 2005; 11: 76– 80.

  8. Heesen C, Bruce J, Feys P, . Adherence in multiple sclerosis (ADAMS): Classification, relevance, and research needs. A meeting report. Mult Scler. 2014; 20: 1795– 1798.

  9. Solari A, Oliver D, Force EANGT. Palliative care in multiple sclerosis: European guideline. Mult Scler. 2020; 26: 1009– 1011.

  10. Bradford EH, Baert I, Finlayson M, Feys P, Wagner J. Feasibility of an International Multiple Sclerosis Rehabilitation Data Repository: perceived challenges and motivators for sharing data. Int J MS Care. 2018; 20: 17– 26.

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