The 21st century is the age of aging populations, with an increasing prevalence of noncommunicable and chronic conditions, increasing health care costs, and increasing survivors from injury and illness. As D. Kos and her colleagues point out in the introduction of their article on engagement, it is therefore not surprising that the World Health Organization recently stressed that rehabilitation is a major future health management area because it provides many opportunities: reducing hospital length of stay, increasing functionality of individuals, keeping people at or bringing people to work, and increasing health and well-being.
This issue of the International Journal of MS Care features articles from the European network of multiple sclerosis (MS) rehabilitation centers, RIMS (Rehabilitation in Multiple Sclerosis), the European partner organization of the US-American CMSC (Consortium of Multiple Sclerosis Centers). Among other activities (see also the editorial below by former RIMS president P. Feys), RIMS works within six special interest groups (SIGs): Mobility; Psychology and Neuropsychology; Communication and Swallowing; Bladder, Bowel, and Sexuality; Occupation; and Patient Autonomy. These domains address major rehabilitation areas in MS. While all of these areas considerably overlap, there is interaction between these groups, with joint meetings and projects. In this issue, five SIGs present their actual focus of interest, which always bridges research and care. In addition, the APPECO (Applying Evidence with Confidence) project, which M. Heine and colleagues report on, pursues the vision of a living systematic review, making current evidence on rehabilitation interventions in MS accessible to all people working with persons with the disease. A report on lower urinary tract symptoms by H.B. Al Dandan and colleagues already appeared in the March/April 2020 issue of the journal and is still an active continuing education article.
In the article by D. Kos (RIMS President) and coworkers from the Occupation group, they provide a scoping review on the potential of “engagement” in rehabilitation from an occupational therapist perspective. Engagement is found to be related to participation and occupational and lifestyle balance. However, engagement stresses the personal value and involvement of the whole person. The article nicely describes the different meanings of these terms. The authors refer to fatigue and cognitive complaints as major symptom areas where strategies for engagement may be used. Improving self-management skills in these areas is at the core of multidisciplinary management, which has shown short-term efficacy in improving engagement.
J. Pöttgen (Chair, SIG on Psychology and Neuropsychology) and collaborators review the evidence for interventions for sexual dysfunction, which is often underrecognized in MS. Because sexuality encompasses vegetative functions, psychology, and communication, its assessment and rehabilitation are by definition multidisciplinary. In their systematic review, the authors show that there is a paucity of studies in this area. However, frameworks such as the PLISSIT (Permission, Limited Information, Specific Suggestions, Intensive Therapy) model have shown to facilitate communication about sexuality in rehabilitation in pilot work.
Falls are highly prevalent in MS and substantially affect quality of life, as S. Coote and colleagues from the Mobility group point out. Surprisingly, however, fall prevention programs are rarely implemented in European MS centers. Falls are individual and multifactorial. A previous fall or near fall is the best predictor of future falls, so individuals should be asked about this history. Therefore, interventions will likely need to adopt an individually tailored and multifactorial approach. While previous work has focused on exercise-based interventions, newer interventions that use both education and exercise show promising results.
L. Ruhaak and coworkers (Communication and Swallowing group) point out that problems with eating, drinking, and communication, which are normally self-evident activities of daily living, are highly interrelated and have a high impact on activity and participation. Their narrative review focuses on behavioral treatments for dysarthria including breathing exercises and a reflection on the (neuro)psychological aspects of communication (ie, the impact of verbal fluency, attention, mood alteration, and mental fatigue). The authors state that there is a lack of evidence on the diagnostic evaluation and treatment of dysphagia and communication disorders, and that there is only scant high-quality research available yet.
A. Giordano and colleagues (Patient Autonomy group) performed a scoping review on patient autonomy in MS covering a recent 5-year period. They show a changing paradigm from a paternalistic to a partnership, or even consumer-determined, model in medicine, which, by the way, has already been adopted by rehabilitation health professionals some years ago. Although the authors found a substantial number of articles, very few controlled studies on interventions to increase patient autonomy have been performed. Decisions on immunotherapy was the most researched topic. Shared decision making was the most discussed concept to enable patient autonomy. They conclude that more education of stakeholders, patients, and physicians is needed, in addition to more controlled studies, to enable more shared decision making. This article offers continuing education credit as well.
The APPECO platform (www.appeco.net) was launched as a RIMS initiative to make evidence on rehabilitation interventions in MS accessible for any health professional. APPECO currently hosts detailed information from 250 randomized clinical trials. It has the potential to address key challenges in evidence-based rehabilitation medicine for MS and aims to accelerate knowledge transfer from evidence into clinical practice. Continued resources are necessary to keep it up to date. While use of the platform has already been demonstrated, the impact on clinical practice needs further investigation.
Taken together, the papers in this issue show the vivid field of MS rehabilitation. Indirectly, this series also implies that people with MS should have access to rehabilitation, throughout the disease and when they need it, to enhance their ability to adapt to their health situation and continue to make their life goals happen.