Diet and multiple sclerosis - development and mixed methods feasibility testing of a comprehensive nutritional information resource (NUTRIMS).

ABSTRACT

PURPOSE: Persons 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). METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.