Feasibility of a co-designed online nutrition education program for people with multiple sclerosis.

OBJECTIVE: Diet quality is important for people with multiple sclerosis (MS), but conflicting online information causes them confusion. People with MS want evidence-based MS-specific information to help them make healthy dietary changes, and we co-designed an asynchronous, online nutrition education program (Eating Well with MS) with the MS community. Our aim was to determine the feasibility of Eating Well with MS. METHODS: We used a single-arm pre-post design. The feasibility trial was a nine-week intervention with adults with confirmed MS. Feasibility outcomes: 1) demand (recruitment); 2) practicality (completion); 3) acceptability (Intrinsic Motivation Inventory: interest/enjoyment and value/usefulness subscales); and 4) limited efficacy testing (Diet Habits Questionnaire (DHQ); Critical Nutrition Literacy Tool (CNLT); Food Literacy Behaviour Checklist (FLBC), using intention-to-treat analysis). RESULTS: Recruitment (n = 70) exceeded the target (n = 48) within six weeks. Of the 70 enrolled, 84 % completed at least one module and 54 % completed the full program (five modules). The median interest/enjoyment rating was 5 out of 7 and median value/usefulness rating was 6 out of 7 (where 7 = 'very true'). Compared to pre-intervention, DHQ, CNLT, and FLBC scores all statistically significantly improved post-intervention. CONCLUSION: Eating Well with MS was well received by the MS community and improved their dietary behaviours; demonstrating feasibility. Our findings support the use of co-design methods when developing resources to improve dietary behaviours.

A collaborative approach to designing an online nutrition education program for people with multiple sclerosis.

PURPOSE: People with multiple sclerosis (pwMS) want disease-specific dietary advice to reduce the confusion around diet. This study used co-design principles to develop an online nutrition education program for pwMS. METHODS: Mixed-methods (multiphase sequential design). Phase 1: online survey (n = 114 pwMS) to explore preferred content and characteristics of a nutrition program and develop a draft program. Phase 2: feedback on the draft program from stakeholders (two meetings; n = 10 pwMS and multiple sclerosis (MS) health professionals) and pwMS (two workshops; n = 6) to produce a full program prototype. Phase 3: cognitive interviews (n = 8 pwMS plus 1 spouse) to explore acceptability and ease of comprehension of one module of the program, analysed using deductive content analysis. RESULTS: Preferred topics were included in the program, which were further developed with consumer feedback. Cognitive interviews produced four themes: (1) positive and targeted messaging to motivate behaviour change; (2) "not enough evidence" is not good enough; (3) expert advice builds in credibility; and (4) engaging and appropriate online design elements are crucial. CONCLUSIONS: Positive language appears to improve motivation to make healthy dietary changes and engagement with evidence-based nutrition resources. To ensure acceptability, health professionals can use co-design to engage consumers when developing resources for pwMS.IMPLICATIONS FOR REHABILITATIONCo-designed nutrition education programs can help people achieve high-quality diets in line with recommendations, but very few programs exist for people with multiple sclerosis (MS), and none were co-designedThe participatory research in this study was instrumental in ensuring that important information regarding program acceptability was identifiedCo-design can ensure that the language is appropriate for the target audience, and positive language appeared to improve motivation in people with MS to engage with the online nutrition education programWhere practical and feasible, health professionals should collaborate with MS consumers when developing resources, and use positive, empowering language.

Nutrition Education Programs for Adults with Neurological Diseases Are Lacking: A Scoping Review.

The nutrition recommendation for most common neurological diseases is to follow national dietary guidelines. This is to mitigate malnutrition, reduce the risk of diet-related diseases, and to help manage some common symptoms, including constipation. Nutrition education programs can support people in adhering to guidelines; hence the aim of this scoping review was to explore what programs have been implemented for adults with neurological diseases. We conducted this review according to a published a priori protocol. From 2555 articles screened, 13 were included (dementia n = 6; multiple sclerosis n = 4; stroke survivors n = 2; Parkinson's n = 1). There were no programs for epilepsy, Huntington's, and motor neurone disease. Program duration and number of sessions varied widely; however, weekly delivery was most common. Just over half were delivered by dietitians. Most did not report using a behavior change theory. Commonly used behavior change techniques were instruction on how to perform a behavior, credible source, and behavioral practice/rehearsal. Evidence of nutrition education programs for adults with neurological diseases is lacking. Of those that are published, many do not meet best practice principles for nutrition education regarding delivery, educator characteristics, and evaluation. More programs aligning with best practice principles are needed to assess characteristics that lead to behavior change.

Navigating dietary advice for multiple sclerosis.

BACKGROUND: Multiple sclerosis (MS) is an inflammatory demyelinating disease with no known cure. Numerous diets are promoted to reduce symptoms or even cure MS, despite insufficient evidence for any therapeutic diet. There are few qualitative studies exploring the experiences of people with MS in relation to diet, and no use of theory to explain the findings. PURPOSE: To explore the experiences of adults with MS when navigating dietary advice, their attitudes when making dietary decisions, and their needs regarding dietary resources and education. METHODS: In this qualitative study, we conducted six focus groups with people with MS (n = 33 plus one spouse without MS). Groups were audio-recorded and transcribed verbatim. Primary analysis used a general inductive approach with thematic analysis. Secondary analysis aligned themes with the constructs of the self-determination theory. RESULTS: Six themes emerged: (a) confusion about where to seek dietary advice; (b) scepticism towards national dietary guidelines; (c) personalized approaches to dietary change; (d) barriers to dietary changes; (e) judging if dietary changes work; and (f) wanting dietary guidelines for MS. CONCLUSION: People with MS are highly motivated to make dietary changes and improve their health. The self-determination theory explained why people with MS make dietary modifications, and the varying levels of motivation. MS-specific dietary resources and nutrition education need to incorporate ways to increase autonomous forms of motivation. Future dietary intervention studies could use the self-determination theory as a framework to improve long-term adherence to healthier diets.

Dietary education programs for adults with neurological diseases: a scoping review protocol.

OBJECTIVE: The objective of this review is to identify and map the evidence on the types of dietary education programs that have been implemented and evaluated in any setting for adults with neurological diseases. This review will also examine program characteristics, including program duration, length, and number of sessions, and common behavior change techniques used. INTRODUCTION: Up to 1 billion people are affected by neurological diseases, most commonly Alzheimer's disease and dementias, epilepsy, Huntington's disease, motor neurone disease, multiple sclerosis, Parkinson's disease, and stroke. Dietary recommendations for most of these diseases follow national dietary guidelines. Dietary education programs are recommended by the World Health Organization to promote adherence to a healthy diet, but it is not clear which dietary education programs have been conducted for adults with neurological diseases or the characteristics of such programs. INCLUSION CRITERIA: This review will consider qualitative and intervention studies (randomized controlled trials, non-randomized controlled trials, and pre-post studies) evaluating dietary education programs for adults with neurological diseases. Programs can be any format in any setting, and may include a comparator group (waitlist control, treatment as usual, or another intervention) or have no comparator group. METHODS: CINAHL, Cochrane Database of Systematic Reviews, Emcare, MEDLINE, ProQuest (ProQuest Central and ProQuest Dissertations & Theses), PsycINFO, Cochrane Central Register of Controlled Trials, and Google Scholar will be searched for publications in English. Neurological organizations will be contacted for unpublished literature. Titles and abstracts will be screened, and full texts accessed for final inclusion. Intervention details, study outcomes, behavior change techniques, and findings will be extracted. Results will be presented in a table with accompanying description.

Dietary responses to a multiple sclerosis diagnosis: a qualitative study.

BACKGROUND/OBJECTIVES: Multiple sclerosis (MS) is an immune-mediated disease with no known cure and insufficient evidence to support a special therapeutic diet to alter symptom management or disease progression. Several studies have reported dietary changes made by people with MS, but there has been limited investigation into experiences surrounding diet in those recently diagnosed. This study explored responses to diet after a recent diagnosis of MS in people living in Western Australia. SUBJECTS/METHODS: Eleven adults with MS (mean time since diagnosis 8 months) participated in semi-structured interviews focusing on responses to diet since MS diagnosis. Interviews were transcribed, coded and analysed using grounded theory principles. RESULTS: Three theme responses emerged; (1) the perceived incompatibility of lack of/or generalised dietary advice with disease seriousness at the time of diagnosis; (2) extensive personal research and information seeking with difficulty judging credibility, and (3) self-experimentation with diet to either control MS symptoms or to cure MS. CONCLUSIONS: Given the seriousness of the disease, there is a perceived gap in dietary information provided at the time of diagnosis. Healthcare professionals should address concerns with alternative therapeutic diets advertised to treat or cure MS, and clearly convey the reasoning for the general healthy dietary recommendations. This would better align advice with the perceptions about the role of diet in MS, assist people with MS in need of information and minimise dietary self-experimentation. Future research should explore the importance of diet for those who have had MS for a longer period of time.

Reported Changes in Dietary Behavior Following a First Clinical Diagnosis of Central Nervous System Demyelination.

BACKGROUND/OBJECTIVES: Although the current evidence is insufficient to recommend a special diet for people with multiple sclerosis (MS), dietary advice for people with MS is prolific online and in the media. This study aimed to describe dietary changes made in the year following a first clinical diagnosis of central nervous system demyelination (FCD), a common precursor to MS. SUBJECTS/METHODS: We used follow-up data from the Ausimmune Study, a multicentre matched case-control study examining the environmental risk factors for a FCD. A total of 244 cases (60 male, 184 female) completed a 1-year follow-up interview, which included a question about dietary changes. We described the number and proportion (%) of participants who reported making dietary changes and the type of change made. We investigated independent predictors of making a dietary change using a multivariable logistic regression model. RESULTS: A total of 38% (n = 92) of participants at the 1-year follow-up reported making at least one dietary change over the last year. There were no statistically significant independent associations between any participant characteristic and odds of making a dietary change. Of those who made at least one dietary change, the most common changes were increasing fruit and/or vegetable intake (27%, n = 25) and following a low-fat diet (25%, n = 23). CONCLUSION: A considerable proportion of the study population reported making at least one dietary change in the year following a FCD, with the majority of changes being toward a healthier diet. Further research is warranted to investigate the reasons behind any dietary changes adopted by people with a FCD or with MS, and whether making a dietary change has benefits for the progression of demyelinating diseases, e.g., to a diagnosis of MS, as well as for general health and well-being.