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Background/Objectives: Persons with MS (pwMSs) are often confronted with contradictory dietary advice, which is not always based on sound scientific evidence. This may lead to poor MS-specific nutrition knowledge (MSNK) and food literacy (MSFL). To date, no studies have assessed MSNK and MSFL among pwMSs. Moreover, no validated tools to measure the effects of educational interventions are available. The aim of this study was to develop and validate MS-specific instruments to measure MSNK and MSFL among pwMSs. Methods: Based on a validated food literacy (FL) screener for the general population and prior research about the information needs of pwMSs, we developed 14 MSFL items and 11 MS-specific nutrition knowledge questions. Cognitive debriefing was conducted with 10 pwMSs and resulted in a 12-item MS food literacy questionnaire (MSFLQ) and an 11-item MS nutrition knowledge questionnaire (MSNKQ). After refinement, both questionnaires were pilot tested in an online survey to explore their comprehensibility. The MSNKQ was analyzed descriptively (mean and percentage of correctly answered questions). For MSFLQ item difficulty, the discriminatory power of the items, internal consistency and convergent/divergent validity were assessed. Results: In total, 148 pwMSs (age: 47.1 years (SD = 12.5); 102 women (69%)) completed the online survey. On average, participants answered 3.51/11 MSNK questions correctly (31.9%). The MSFLQ showed good internal consistency (Cronbach's alpha = 0.85), item difficulty was good and the discriminatory power of the items was satisfactory. Correlations between the MSFLQ and a general food literacy questionnaire was high (r = 0.626, p < 0.001), but only small with the MSNKQ (r = 0.180; p = 0.029), underlining the different constructs. Conclusions: MSNK among pwMSs in Germany is low. The MSNKQ and MSFLQ appear to be suitable instruments to assess MSNK and MSFL and might serve as outcome measures for educational interventions. [ABSTRACT FROM AUTHOR]

Background: Despite the evidence of beneficial effects of physical activity (PA), people with multiple sclerosis (pwMS) are less physically active than the general population. To increase PA in pwMS, we developed a structured individually tailored PA promotion program which is conducted within clinical practice in a university-based outpatient clinic since 2016. This study serves as retrospective quality control of this program. Objective: In a retrospective cohort study, we assessed the physical fitness of pwMS and the impact of the program on short- and long-term PA changes and behavioral determinants. Methods: The program consisted of four appointments each 2–4 weeks apart. Spiroergometric test results of female pwMS were compared to female non-MS controls who underwent a voluntary physical fitness analysis. The short version of the Freiburger questionnaire, self-developed questions and the modified Physical activity screening questionnaire (PASQ) were sent to all participants assessing the PA levels before the program, 3 months after the program (shortterm), and at the time of the survey (long-term). Additionally, established questionnaires assessed behavioral determinants before the program and longterm. Results: A total of 166 participants [mean age 38.32 (± 10.61 SD), mean EDSS 2.30 (±1.29 SD)] and mostly females (63.3%, n =  105) were included in the study and started the program. A total of 136 participants completed the program. Out of these 63.9% (n  =  87) answered the questionnaires in 12.38 (±11.34 SD) months after finishing the program. At baseline female pwMS (n  =  100) showed a lower physical fitness in comparison to non-MS controls (n  =  26) (maximal workload (Watts): 138.86  ±  37.85 vs. 191.73  ±  45.25, p  <  0.001; peak oxygen consumption (ml  min−1 kg−1 ): 26.40  ±  7.23 vs. 31.56  ±  10.10, p  =  0.020). pwMS were more regularly active in short- (62.1%) and long-term (55.2%) compared to baseline (24.2%, p  <  0.001). Among the activated participants, we observed improved internal motivation (p  =  0.002) and decreased perception of barriers (p  =  0.006) compared to baseline. Conclusion: PwMS showed a lower physical fitness in comparison to nonMS controls. An individually tailored PA promotion program might improve behavioral determinants and thereby increase short- and long-term PA levels of pwMS. [ABSTRACT FROM AUTHOR]

AbstractPurposeMethodsResultsConclusions\nIMPLICATIONS FOR REHABILITATIONPersons with multiple sclerosis (pwMS) are often confused by contradictory dietary advice. The purpose of this research was to explore the information needs and design a comprehensive, evidence-based nutritional information resource on diet and MS (NUTRIMS).A mixed-methods design with three sequential phases was adopted: (1) Needs assessment and development: Two focus groups with pwMS to explore experiences, information needs and preferred support around diet. Development of a draft NUTRIMS, (2) Feasibility Step 1: Feedback on the draft NUTRIMS from stakeholders and (3) Feasibility Step 2: Online survey among pwMS to explore content quality and acceptability.Two focus groups with a total of 12 pwMS showed that MS-specific evidence on food groups/ingredients, nutrients and special diets were of most interest. The draft NUTRIMS was refined through feedback from 13 stakeholders. The pre-final NUTRIMS consisted of 81 pages including scientific references on each topic, 16 illustrations and a glossary of terms. 85 pwMS participated in the online survey and reported an intensive use and high satisfaction with the information resource, which was perceived as comprehensible, highly credible and useful for making decisions on dietary change.A collaborative research approach led to a well-accepted nutrition information resource.A collaborative approach with persons with multiple sclerosis and stakeholders is warranted when designing nutritional information resources to meet the information needs and increase acceptanceProviding a comprehensive overview of the multiple sclerosis specific evidence and proven benefits of healthy dietary patterns on body weight and comorbidities, that might subsequently impact on multiple sclerosis progression, is well accepted by the target audienceEvidence-based information on diet and multiple sclerosis is a prerequisite for informed decisions; however most persons with multiple sclerosis will need individual dietary advice or at least online behaviour change programs to translate knowledge into desired behaviour changeDietary advice and/or online programs should be evaluated to determine whether they are suitable for improving dietary intake and reducing the risk of malnutrition from following non-evidence based special MS diets.A collaborative approach with persons with multiple sclerosis and stakeholders is warranted when designing nutritional information resources to meet the information needs and increase acceptanceProviding a comprehensive overview of the multiple sclerosis specific evidence and proven benefits of healthy dietary patterns on body weight and comorbidities, that might subsequently impact on multiple sclerosis progression, is well accepted by the target audienceEvidence-based information on diet and multiple sclerosis is a prerequisite for informed decisions; however most persons with multiple sclerosis will need individual dietary advice or at least online behaviour change programs to translate knowledge into desired behaviour changeDietary advice and/or online programs should be evaluated to determine whether they are suitable for improving dietary intake and reducing the risk of malnutrition from following non-evidence based special MS diets. [ABSTRACT FROM AUTHOR]

We know very little about exercise adherence, compliance and sustainability in multiple sclerosis (MS), yet adherence is seemingly important for yielding immediate and sustained health benefits. This paper is focused on exercise adherence, compliance and sustainability in the context of informing research and practice involving MS. This focus is critical for clarifying terminology for future research and providing a roadmap guiding clinical research and practice. Our objective was accomplished through a narrative summary of the literature by a panel of experts on exercise adherence from the Moving Exercise Research in Multiple Sclerosis Forward (MoXFo) initiative and a concluding summary of the state of the literature and future research directions. The panel of experts identified three overall themes (Background and Importance; Understanding and Promoting Exercise Adherence, Compliance and Sustainability and Challenges to Exercise Adherence, Compliance and Sustainability) that represented a categorization of nine subthemes. These overall themes and subthemes formed the basis of our recommendations regarding future research broadly involving exercise adherence in MS. Overall, there is limited evidence on rates and determinants of exercise adherence and compliance in MS, and little is known about techniques and interventions for immediate and long-term exercise behaviour change. [ABSTRACT FROM AUTHOR]

To examine the possible contributions of capability, opportunity, and motivation for explaining long-term physical activity among people with multiple sclerosis and to report the results of a German survey study. The questionnaire, which was based on an expert interview study and behavior change theory, was structured and detailed applying the Theoretical Domains Framework. A total of 1027 people with multiple sclerosis provided data on sociodemographics, disease-related characteristics, and a set of constructs possibly related to long-term adherence. Participants were assigned to three groups: not regularly active, currently regularly active, and long-term regularly active. Eta squared was calculated to assess the magnitude of differences between groups using ANOVA. Moderate or large differences between groups were identified for many domains within capability, opportunity, and motivation. For the following theoretical domains, large differences (η2 ≥0.140) were observed: Intention, Behavioural Regulation, Beliefs about Capabilities and Goals. Our results suggest that capability, opportunity, and motivation should be targeted simultaneously when designing future interventions. Inactive people with multiple sclerosis might benefit most from interventions increasing action self-efficacy and intention. Boosting autonomous motivation, goal setting, action planning as well as maintenance and recovery self-efficacy could have a positive effect on long-term adherence. This study applied the COM-B model and Theoretical Domains Framework to identify a set of constructs for explaining long-term physical activity among people with MS. Behaviour change and maintenance interventions for people with MS should include techniques that foster intention, perceived self-efficacy and self-regulatory skills, and promote goal setting and autonomy of motivation for regular physical activity. Although barriers of the physical and social environmental context did not seem to be that important in our sample, scientists should consider addressing them in interventions for inactive and more disabled people with MS. Information about the benefits of physical activity should be regularly provided in MS rehabilitation, while further research should explore the relevance of information provision and knowledge for behaviour change in different groups of people with MS. [ABSTRACT FROM AUTHOR]

Purpose: To explore the views of experts on facilitators and barriers of long-term physical activity among people with multiple sclerosis living in different European countries. Methods: We conducted semi-structured telephone or face to face interviews with twelve multiple sclerosis and physical activity experts (scientists, practitioners, patient representatives) from five European countries. Interviews were audio-recorded, transcribed verbatim and analyzed using thematic analysis. Results: We identified 20 themes and categorized them into environmental and personal factors. The most frequently mentioned and intensively discussed themes were environmental factors. The themes were structured according to possible intervention level: organizational, interpersonal and intrapersonal level themes. Themes at the organizational level comprised availability, access and quality of exercise/physical activity options; health system characteristics like services and organization, health professionals and information provision. The interpersonal level comprised social support and peer support. Disease related factors were the most frequently mentioned intrapersonal level theme. In our study, more codes were obtained for environmental factors than for personal factors. Conclusions: The results suggested that environmental factors may need to be addressed in particular to increase long-term physical activity adherence. This study will inform the design of a survey questionnaire assessing possible barriers and facilitators among people with multiple sclerosis. Long-term physical activity among people with multiple sclerosis is subject to a number of modifiable determinants: personal and environmental factors. Multiple sclerosis exercise experts emphasized the importance of environmental factors on the organizational and interpersonal level. Future physical activity interventions should be guided by a social-ecological perspective. Addressing environmental and personal factors simultaneously to reach optimal long-term outcomes should be considered in future interventions. [ABSTRACT FROM AUTHOR]