Publication
Research Article
Rehabilitation is essential for improving physical, cognitive, and psychological function; independence; and quality of life for people with multiple sclerosis (MS). Rehabilitation in Multiple Sclerosis (RiMS; www.rehabinms.org) is a professional international network for clinicians and researchers dedicated to advancing MS rehabilitation through research, education, and collaboration. With a focus on knowledge exchange and professional development, RiMS supports multidisciplinary rehabilitation efforts across Europe and internationally. Recognizing the persistent challenges in delivering, accessing, and evaluating rehabilitation, Rehabilitation 2030: A Call for Action from the World Health Organization (WHO) outlines key priorities to strengthen global rehabilitation systems. This editorial maps RiMS’s activities and aligns it with the WHO’s 10 priority areas, assessing its contributions and identifying gaps to enhance the understanding of RiMS’ role in contributing to these priorities and to inform the adaptation of strategic action plans to ensure alignment with global priorities.
From the Executive Board, Rehabilitation in Multiple Sclerosis (LM, GB, GG, LGV, LL, JP, AGS, RdN); REVAL Rehabilitation Research Center, Faculty of Rehabilitation Sciences, Hasselt University, Hasselt, Belgium, and IPEM Institute for Systematic Musicology, Ghent University, Ghent, Belgium (LM); University Multiple Sclerosis Center, Hasselt-Pelt, Belgium (LM, GG); Italian MS Society Rehabilitation Center, Genoa, Italy, and Scientific Research Area, Italian MS Foundation, Genoa, Italy (GB); Libra Audiology and Rehabilitation, The Netherlands (GG); Exercise Biology, Department of Public Health, Aarhus University, Aarhus, Denmark (LGH); The Danish MS Hospitals, Ry and Haslev, Denmark (LGH, AGS); University Vita-Salute San Raffaele, Milan, Italy, and Experimental Neurophysiology Unit, INSPE-Institute of Experimental Neurology, Scientific Institute IRCCS San Raffaele, Milan, Italy; and Department of Neurorehabilitation Sciences, Casa di Cura Igea, Milan, Italy (LL); University Medical Center Hamburg-Eppendorf, and the Institute of Neuroimmunology and Multiple Sclerosis, Hamburg, Germany (JP); Department of Health, SINTEF, Trondheim, Norway, and the University of Nottingham, Nottingham, UK (RdN). Correspondence: Roahsn das Nair, PhD, Department of Health Research, SINTEF, Vangslundsgate 10, 7030 Trondheim, Norway; email: roshan.nair@sintef.no
Rehabilitation is an important part of universal health coverage and is a key strategy for achieving United Nations Sustainable Development Goal 3: Ensure healthy lives and promote well-being for all at all ages.1 Multiple sclerosis (MS) is a chronic inflammatory and neurodegenerative central nervous system disorder characterized by a wide range of symptoms (eg, mobility impairments, vision problems, sensory disturbances, cognitive impairments, fatigue, bladder dysfunction) that often co-occur, which makes disease management complex.2 While the advent of highly effective disease-modifying therapies (DMTs) has helped slow disease progression, many people with MS still experience significant challenges with managing their symptoms.3 These difficulties lead to substantial limitations in daily activities, ultimately impacting their personal, social, and professional lives,4 as well as those of their families.5 While there has been considerable progress in symptomatic pharmacological treatment, these approaches are often designed to address individual symptoms in isolation. In contrast, rehabilitation is intrinsically holistic and interdisciplinary, and it aims to enhance overall function and quality of life.6 By supporting independence, rehabilitation enables people with MS to remain active members of society and to contribute both socially
and professionally.7
Rehabilitation has been variously defined. The following, developed by the Cochrane Rehabilitation group (albeit for research purposes) is a comprehensive definition: “In a healthcare context, rehabilitation is defined as a multimodal, person-centered, collaborative process including interventions targeting a person’s capacity (by addressing body structures, functions, and activities/participation) and/or contextual factors related to performance with the goal of optimizing the functioning of persons with health conditions currently experiencing disability or likely to experience disability, or persons with disability.”8 There is now considerable evidence of the value of different forms of rehabilitation for people with MS,9-11 and of different models of delivering rehabilitation (eg, in person, online, in groups, individually, centralized [ie, centers, hospitals] vs decentralized [ie, home, municipality]).12 However, several challenges remain for people with MS to access rehabilitation services and for researchers to evaluate their effectiveness. These challenges can be categorized into 3 areas.
Rehabilitation for people with MS is a complex intervention of multiple interlocking components that need to be delivered effectively and almost always over the long term.6,13 It is often not a quick approach but requires social and behavioral changes from people with MS, making strong patient engagement essential. Systemic challenges—such as rehabilitation being undervalued in health care, inadequate funding, and staffing shortages—have contributed to its lack of prioritization in health and social care. The interdisciplinary nature of rehabilitation means that it is resource intensive. Therefore, to ensure that gains made by patients in rehabilitation are maintained over time, it must be delivered, monitored, and adapted continuously, and patients need to be motivated and supported to continue with their rehabilitation practice throughout their disease course. Furthermore, few structured rehabilitation approaches are fully integrated into health care systems, particularly for chronic conditions, limiting their accessibility and long-term impact.14
Given the challenges outlined above, it is not surprising that people with MS face significant barriers to accessing rehabilitation. Indeed, the content and availability of rehabilitation services (eg, physical rehabilitation) vary across Europe.15 Additional disparities potentially arise from differences in insurance coverage, health care policies, and the educational framework for certifying health care professionals. These differences extend across disciplines. For example, physiotherapy is often well integrated into the health care system of most countries (eg, in Denmark, Germany), yet people with MS may struggle to access other rehabilitation services such as cognitive rehabilitation or specialists in bowel and bladder dysfunction.16 Further, access to rehabilitation can be uneven. In Italy, for instance, individuals living on islands may face greater difficulties reaching rehabilitation services than those on the mainland.17 We note that different contexts of care may greatly influence how rehabilitation is implemented, and such disparities are also evident on other continents. For instance, direct access to physiotherapy varies across different states within the United States.18 These challenges are exacerbated by the rising number of MS diagnoses, which is increasing the demand on rehabilitation services and stretching what can be delivered in a timely manner. Just as early initiation of DMTs is critical,19 the timely start of rehabilitation is equally important.20,21 Research shows that early rehabilitation leads to better outcomes compared with later intervention.20,22 It also shows the effects of rehabilitation continuity throughout the disease course and the necessity to adapt rehabilitation protocols to the individual’s needs over time.11 In addition, access to rehabilitation remains unequal. Certain groups such as minority ethnic communities, individuals from lower socioeconomic backgrounds, and those with high disability levels face significant barriers.23,24 While digital health care technologies have provided valuable solutions to rehabilitation access,25-27 digital exclusion remains an issue. In addition, the delivery of e-health rehabilitation services differs across countries and facilities, further limiting access to care for some people with MS.28,29
The demographic and clinical heterogeneity of people with MS, along with their diverse symptoms, can make evaluating the effectiveness of rehabilitation in clinical trials difficult. These challenges included (1) population: determining whom to include in intervention studies; (2) intervention: delivering highly personalized rehabilitation while ensuring consistency and fidelity; (3) control: identifying an appropriate control group in clinical trials; and (4) outcome: determining what to measure (especially primary outcome measures) and when to measure (eg, evaluating the immediate and/or long-term effects of the intervention, taking into account a disease course that is progressive and dynamic). Moreover, many outcome measures focus on structure, function, and activity levels as defined by the International Classification of Functioning, Disability and Health (ICF) rather than on participation levels.30 Further, some outcomes of particular interest to people with MS, such as well-being and quality of life, are often complex multicomponent constructs that are not easy to measure.31-33
Aligning With Rehabilitation 2030: A Call for Action
Given the urgent and unmet needs and the challenges related to rehabilitation (outlined above), it is unsurprising that the World Health Organization (WHO) released a call to action related to rehabilitation.34 Addressing these challenges requires strong networks that drive research into, education about, and implementation of best practices in rehabilitation. Such a network can be found in Rehabilitation in Multiple Sclerosis (RiMS; https://www.rehabinms.org), with its dedication to promoting high-quality rehabilitation research and clinical practice for people with MS. While its activities take place primarily within Europe, it maintains an international, collaborative scope. RiMS serves as a platform for scientific and clinical knowledge exchange, professional development, and collaboration among researchers, clinicians, and other stakeholders in MS rehabilitation. Its mission is to unite MS health care professionals, researchers, and people with MS through its organization to advance evidence-based rehabilitation for people with MS, promoting their activity, participation, and autonomy. RiMS’ vision is that all people with MS across Europe and beyond have timely and continuous access to high-quality rehabilitation, supported by evidence-based research, continuous professional development, and the implementation of best practices.
In alignment with this vision, we have undertaken an analysis of RiMS’ contributions to the WHO’s Rehabilitation 2030: A Call for Action initiative, marking 3 decades of our commitment to advancing rehabilitation in MS. We have done this by reflecting on our activities and mapping them onto the 10 key priorities of the WHO’s call, which are:
Rehabilitation 2030 calls for strong leadership and the development of a strong multidisciplinary rehabilitation workforce to enhance rehabilitation services globally. RiMS contributes to this agenda through its network of experts, collaborative initiatives, and up-to-date educational programs. RiMS fosters leadership and advocacy in MS rehabilitation through its annual conferences, monthly webinars, and special interest groups (SIGs), which facilitate knowledge exchange and interdisciplinary collaboration. There are currently 6 SIGs: mobility, occupation, autonomy, mood and cognition, bladder and bowel, speech and swallowing. Each SIG is led by a chair and a cochair, who organize workshops and annual meetings. In addition, the SIGs generate evidence via collaboration on international research projects. Examples of these projects include surveys launched during COVID-19 to understand the physical activity needs of people with MS,26,27,35-37 projects on sexual dysfunction in people with MS,38,39 and a Cochrane review project on promoting evidence-based occupational rehabilitation for people with MS. Other ongoing projects include exploring pregnancy-related knowledge needs and vocational rehabilitation needs in people with MS. Additionally, RiMS nurtures early-career researchers through its PhD community and PhD sessions during annual conferences, developing the next generation of health care professionals, researchers, and leaders in MS rehabilitation.
Activities specific to capacity-building efforts include the RiGra (RiMS Grant), which fosters cross-institutional international clinical research and fellowship programs that support institutional visits from one MS center to another within the RIMS network for knowledge exchange. Aligning with the WHO’s priority of expanding on evidence availability, RiMS provides an e-learning platform and monthly webinars on various topics and disciplines, disseminating MS rehabilitation evidence.
To enhance the integration of rehabilitation services within health care systems, the WHO advocates for strengthening intersectoral collaboration. The annual RiMS conference aims to address themes relevant to multidisciplinary stakeholders; however, RiMS does not have dedicated activities to directly contribute to the integration of rehabilitation services within health care systems across countries. Despite this, RiMS actively seeks opportunities to collaborate with organizations such as the European Multiple Sclerosis Platform (EMSP; https://emsp.org), for example, by participating in steering committees for initiatives like the MS Nurse PRO program. Such involvement helps reinforce RiMS’ role in shaping rehabilitation policies and best practices. Additionally, RiMS strives to represent rehabilitation at key events, such as the European Committee for Treatment and Research in Multiple Sclerosis (ECTRIMS; https://ectrims.eu/) conference. A memorandum of understanding between RiMS and ECTRIMS extends this collaboration, leading to joint initiatives such as a combined annual conference every 3 years and joint summer schools. A primary task of RiMS is to ensure that rehabilitation is adequately represented across different health care professions and areas.
Toestablish and strengthen international networks,RiMS fosters international partnerships through reciprocal invited lectures—for instance, RiMS’ presence at the Brazilian Committee for Treatment and Research in Multiple Sclerosis (https://www.bctrims.com.br/) digital conference on multidisciplinary care and the participation of EMSP and International Multiple Sclerosis Cognition Society (https://www.imscogs.com/) representatives at RiMS conferences.
Developing comprehensive rehabilitation deliverymodels that provide equalaccess to high-quality rehabilitation services for all populations, including those in lower-income countries or in rural or remote areas, remains a key WHO priority. RiMS contributes to this goal through research initiatives to advance rehabilitation service delivery, improve accessibility, and integrate digital health solutions. A recent example is RiMS’ participation in the European Union (EU) Horizon 2020 project GESTUS, which focuses on rehabilitation service delivery through digital health (grant 101180173).
The WHO calls for increased financing mechanisms to support rehabilitation efforts. RiMS sustains its activities through membership subscriptionsandindustry sponsorships, which support its annual conferences, webinars, RiGra, and fellowship programs. However, RiMS, like other networks and initiatives that support rehabilitation, remains dependent on time-limited, routinely negotiated, and limited funding support, which limits the scale and scope of what it can do. We are exploring options to diversify our funding sources, such as engagement with MS societies and patient organizations, which could expand RiMS’ capacity to develop and deliver more activities to benefit the MS community.
The last 3 key priorities of the call to action are enhancing health information systems, incorporating rehabilitation into universal health coverage, and strengthening rehabilitation planning and implementation. A robust health information system that integrates rehabilitation data and aligns with the ICF is essential for evidence-based decision-making, as well as facilitating ease of application in daily clinical practice. We look forward to the solutions artificial intelligence might offer in this space. Similarly, ensuring rehabilitation is embedded within universal health coverage is crucial for accessibility and equity, while effective planning and implementation strategies are needed to optimize service delivery. At present, RiMS does not have initiatives that directly address these needs, but it offers support to members and the broader MS community who may be interested in researching these topics, and many of RiMS’ members, including the executive board, engage with policy makers to advance rehabilitation for people with MS.
Despite the collective efforts of RiMS and other stakeholders in MS rehabilitation, significant challenges remain to address the unmet needs of people with MS. One of the most pressing barriers is funding constraints, which not only impact rehabilitation services within health care systems but also limit the capacity of networks like RiMS to expand their reach and impact. Rehabilitation has long been underfunded and underprioritized,40 and this is reflected in the financial limitations that hinder the scaling of key initiatives, such as capacity-building efforts, international collaborations, and research into innovative service delivery models.
There are several key opportunities for expanding the impact of rehabilitation. As the largest network of MS rehabilitation professionals in Europe, RiMS is well positioned to extend its expertise within and beyond European borders, including to low- and middle-income countries where rehabilitation services are even more stretched. This could be achieved through knowledge-exchange programs, scholarships, and collaborative initiatives, particularly with national MS societies and patient organizations.
Another critical opportunity lies in the development of the next generation of rehabilitation clinical professionals and researchers. RiMS aims to play a key role in fostering talent through specialist training courses, mentorship programs, and innovative educational resources, such as our fellowship program, which focuses on supporting early career clinicians and researchers. Strengthening multidisciplinary rehabilitation training can help address workforce shortages and ensure that rehabilitation professionals are equipped with up-to-date knowledge and skills to meet the evolving needs of people with MS.
Aside from supporting the development of MS rehabilitation researchers, RiMS is now directly involved in rehabilitation research projects that are funded by the EU and other large benefactors. RiMS aspires to take this opportunity to the next level by contributing to the coordination of international MS rehabilitation research.
Additionally, the increasing demand for rehabilitation—driven by factors such as limited effectiveness of MS medication in effecting functional changes, aging populations, the long-term effects of COVID-19, the impact of war and climate change, and the rising prevalence of noncommunicable diseases—presents a pivotal moment for prioritizing rehabilitation as a core health care service. This global shift in rehabilitation needs offers RiMS an opportunity to advocate for greater integration of rehabilitation within health care systems, increased policy engagement, and stronger partnerships with governments, industry, and technology developers. Nevertheless, achieving these goals requires a coordinated effort from multiple stakeholders. WHO’s targeted timeline of the Rehabilitation 2030 initiativeis fast approaching, and the challenges outlined in this paper cannot be overcome withoutstrong leadership, political commitment, and sustainable financing mechanisms. RiMS remains committed to advancing rehabilitation for people with MS and calls on policymakers, health care providers, researchers, and industry partners to join forces in strengthening rehabilitation systems worldwide. If ever there was a time to act, it is now.
Conflicts of Interest: Roshan das Nair, PhD, has received funding from Biogen, Merck, and Novartis for presenting lectures (speakers’ bureau) at meetings/conferences. All other authors declare no conflicts of interest.
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