Background: Patient autonomy is a bioethical principle that was strengthened in the revised Declaration of Geneva. Shared decision making (SDM) is particularly relevant in the management of multiple sclerosis (MS) because many preference-sensitive decisions have to be made during the disease course. We aimed to summarize the available evidence on SDM in the MS field and to inform future research and practice. Methods: We performed a scoping review by searching MEDLINE (past 5 years). Studies were included if they reported primary/secondary research and focused on SDM related to people with MS. Data were grouped into topics, with results presented in narrative form. Results: From 865 references, we included 55 studies conducted mostly in Europe. Half of the studies were observational, followed by qualitative (20%), mixed-methods (17%), randomized controlled trials (RCTs, 5%), quasi-experimental (5%), and reviews (4%). Most studies addressed people with relapsing-remitting MS (85%); the remaining addressed health care professionals, patients’ significant others, or a combination. We identified five main topics: decisions on disease-modifying drugs, decisions on chronic cerebrospinal venous insufficiency treatment, information provision and patient education, health literacy, and risk knowledge. Conclusions: The high proportion of included studies on SDM in MS in Europe suggests an earlier adoption of these concepts in this area. Decisions on disease-modifying drugs was the prevalent topic. Only 5% of studies were RCTs, indicating that more research is needed to study the effectiveness of SDM interventions. Studies addressing people with primary and secondary progressive MS are also needed. CME/CNE Information Activity Available Online: To access the article, post-test, and evaluation online, go to http://www.cmscscholar.org . Target Audience: The target audience for this activity is physicians, physician assistants, nursing professionals, and other health care providers involved in the management of patients with multiple sclerosis (MS). Learning Objectives: 1) Identify the extent, range, and nature of the recent evidence on shared decision making and patient autonomy in MS. 2) Examine the limitations of the current available evidence and resulting research/knowledge gaps. Accreditation Statement: In support of improving patient care, this activity has been planned and implemented by the Consortium of Multiple Sclerosis Centers (CMSC) and Delaware Media Group. The CMSC is jointly accredited by the Accreditation Council for Continuing Medical Education (ACCME), the Accreditation Council for Pharmacy Education (ACPE), and the American Nurses Credentialing Center (ANCC), to provide continuing education for the healthcare team. Physician Credit: The CMSC designates this journal-based activity for a maximum of 1.0 AMA PRA Category 1 Credit(s) ™. Physicians should claim only the credit commensurate with the extent of their participation in the activity. Nurse Credit: The CMSC designates this enduring material for 1.0 contact hour (none in the area of pharmacology). Disclosures: Francois Bethoux, MD, Editor in Chief of the International Journal of MS Care (IJMSC) , has served as Physician Planner for this activity. He has disclosed relationships with Springer Publishing (royalty), Qr8 (receipt of intellectual property rights/patent holder), Biogen (receipt of intellectual property rights/patent holder, speakers’ bureau), GW Pharma (consulting fee), MedRhythms (consulting fee, contracted research), Genentech (consulting fee), Helius (consulting fee), and Adamas Pharmaceuticals (contracted research). Laurie Scudder, DNP, NP, has served as Reviewer for this activity. She has disclosed no relevant financial relationships. Anne Christin Rahn, PhD, has disclosed no relevant financial relationships. Alessandra Solari, MD, has disclosed relationships with Biogen, Merck Serono, Novartis, Almirall, and Excemed (personal fees for speaker honoraria). Heleen Beckerman, PhD, has disclosed no relevant financial relationships. Richard Nicholas, PhD, has disclosed relationships with Biogen, Roche, and Novartis (consulting fee) and Novartis, Biogen, Roche, and Sanofi (principal investigator on MS trials). David Wilkie, PhD, has disclosed no relevant financial relationships. Christoph Heesen, MD, has disclosed no relevant financial relationships. Andrea Giordano, MSc, has disclosed no relevant financial relationships. The peer reviewer for IJMSC has disclosed relationships with Biogen, Novartis, Roche, and Sanofi Genzyme (consulting fee, speakers’ bureau, contracted research); EMD Serono (consulting fee, speakers’ bureau); and Alexion and Teva Neuroscience (consulting fee). The staff at IJMSC , CMSC, and Delaware Media Group who are in a position to influence content have disclosed no relevant financial relationships. Note: Financial relationships may have changed in the interval between listing these disclosures and publication of the article. Method of Participation: Release Date: December 1, 2020 Valid for Credit Through: December 1, 2021 In order to receive CME/CNE credit, participants must: 1) Review the continuing education information, including learning objectives and author disclosures. 2) Study the educational content. 3) Complete the post-test and evaluation, which are available at http://www.cmscscholar.org Statements of Credit are awarded upon successful completion of the evaluation and the post-test with a passing score of >70%. The post-test may be retaken if necessary. There is no fee to participate in this activity. Disclosure of Unlabeled Use: This educational activity may contain discussion of published and/or investigational uses of agents that are not approved by the FDA. The CMSC and Delaware Media Group do not recommend the use of any agent outside of the labeled indications. The opinions expressed in the educational activity are those of the faculty and do not necessarily represent the views of the CMSC or Delaware Media Group. Disclaimer: Participants have an implied responsibility to use the newly acquired information to enhance patient outcomes and their own professional development. The information presented in this activity is not meant to serve as a guideline for patient management. Any medications, diagnostic procedures, or treatments discussed in this publication should not be used by clinicians or other health care professionals without first evaluating their patients’ conditions, considering possible contraindications or risks, reviewing any applicable manufacturer’s product information, and comparing any therapeutic approach with the recommendations of other authorities.

Background: Sexual dysfunction in multiple sclerosis (MS) is a significant but overlooked impairment, and treatment options are rare. The aims of this systematic review were to identify psychological interventions used to treat sexual dysfunction in MS, to estimate their benefit, and to note appropriate treatment approaches for research projects and clinical use. Methods: A systematic review update was conducted to find psychological interventions aiming to improve sexual dysfunction in MS. A comprehensive search and review of MEDLINE, PsycINFO, CINAHL, and PubMed were completed, and the effects and quality of selected studies were reported. Results: Six publications with 295 participants were identified. All selected studies assessed the effectiveness of psychological interventions on sexual dysfunction or sexual satisfaction in people with MS; four studies directly targeted sexual dysfunction in MS, one was a mindfulness yoga program to improve fatigue and quality of life, and one other presented a secondary analysis of a study targeting depression in MS. All six studies reported significant improvements in sexual dysfunction or sexual satisfaction and somewhat in psychological variables. Conclusions: A pressing need for development and adequate evaluation of psychological interventions for sexual dysfunction in MS remains. In addition, assessment of sexual dysfunction in MS and its treatment should be more focused in clinical care.

Background: Treatment adherence is fundamental in multiple sclerosis (MS) management. Adherence rates vary significantly between studies, ranging from 30% to almost 90%, depending on assessment method and medication type. This study aimed to identify patient-related categories associated with treatment modification or discontinuation in people with MS receiving either first- or second-line treatment. Methods: Semistructured interviews were performed with 23 people with MS: 11 receiving first-line treatment and 12 receiving second-line treatment. Medication history, experiences with previous medications, decision-making processes regarding immunotherapy, adherence behavior, and reasons for adherence/nonadherence were explored using open-ended questions. Qualitative content analysis was performed using a combined deductive-inductive approach in building a coding frame. Differences in coding frequencies were compared between the two groups and analyzed quantitatively. Cohen’s kappas of 0.76 for people with MS receiving first-line treatment and 0.64 for the second-line sample were achieved between the two coders. Results: One key reason for nonadherence reported by first-line–treated people with MS was burdensome side effects, and for adherence was belief in medication effectiveness . In people with MS receiving second-line treatment, lack of perceived medication effectiveness was a key category related to changes in or discontinuation of immunotherapy. Reasons for adherence were positive illness beliefs/perceptions and belief in highly active disease . Intentional nonadherence was a major issue for first-line treatment and less relevant for second-line treatment. Conclusions: These results indicate specific differences in factors mitigating adherence in people with MS receiving first- and second-line treatment.

Background: Multiple sclerosis (MS) is an inflammatory and neurodegenerative disease of the central nervous system. Fatigue is a common and disabling symptom, often causing decreased quality of life, social withdrawal, and unemployment. We developed and studied the feasibility of a cognitive-behavioral group intervention to manage fatigue in MS. We aimed to integrate the concepts of cognitive-behavioral therapy and evidence-based patient information. Methods: We conducted patient interviews and a focus group to assess patients' interest in and need for fatigue self-management training and developed the program accordingly. The program consists of six 90-minute modules, which were structured with the use of moderation cards, helping to guarantee treatment fidelity. The program was tested on three pilot groups (N = 16) in a rehabilitation center. Fatigue, depression, and coping self-efficacy were assessed at baseline and after the intervention. Acceptance and general satisfaction with the program were also evaluated. Results: Patient interviews elicited different characteristics of fatigue, suggesting that patients had different requirements. The program was very acceptable to patients. Pre-post assessments of the pilot study showed significantly improved scores on the Coping Self-Efficacy Scale (P = .013) but not on the Fatigue Scale for Motor and Cognitive Functions and the 30-item Inventory of Depressive Symptomatology. Conclusions: These preliminary results suggest that this program is a feasible cognitive-behavioral group training program that may improve coping self-efficacy and has the potential to subsequently reduce fatigue. The next step is evaluation of the program in a randomized controlled trial.

Background: Multiple sclerosis (MS) is an inflammatory and neurodegenerative disease of the central nervous system of potential autoimmune origin that is frequently associated with psychological disorders and cognitive deficits, as well as with fatigue, stress, and psychosocial burden. These factors often cause decreased quality of life, social withdrawal, and unemployment. We describe the development of a cognitive-behavioral group intervention based on the concept of metacognition and evaluation of the feasibility and acceptance of the program as a rehabilitation tool. Methods: Metacognitive Training in MS (MaTiMS) consists of six modules, each 90 minutes in duration. We tested acceptance and design of the program in six focus groups (entire sample, n = 27). Framework analysis of transcripts was used to identify key topics and categories. Program modules were revised in accordance with appropriate recommendations of focus group members. We subsequently evaluated MaTiMS in two groups (n = 5, n = 6) in a rehabilitation center. Neuropsychological functioning as well as coping self-efficacy, depression, stress, perceived cognitive deficit, fatigue, and quality of life were assessed. Acceptance of MaTiMS from the patient perspective was also studied. Results: The modules were highly accepted by patients. Pre-post assessments showed significant improvements in the Coping Self Efficacy Scale (P = .007), the Würzburger Fatigue Inventory for MS Score (P = .028), and the Hamburg Quality of Life Questionnaire in Multiple Sclerosis Mood subscale (P = .046). Conclusions: These preliminary results suggest that MaTiMS represents a feasible psychological group training program that may foster improvements in self-efficacy, fatigue, and mood. The next step will be an evaluation of the program in a randomized controlled trial.