Riemann-Lorenz Karin, Krause Nicole, Marck Claudia H, Daubmann Anne, Heesen Christoph
Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Disability and Health Unit, Centre for Health Policy, The Melbourne School of Population and Global Health, The University of Melbourne, Melbourne, Australia.
Disabil Rehabil. 2025 Apr;47(8):1988-1999. doi: 10.1080/09638288.2024.2388259. Epub 2024 Sep 1.
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).
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.
多发性硬化症患者（pwMS）常常被相互矛盾的饮食建议弄得不知所措。本研究的目的是探索信息需求，并设计一个关于饮食与多发性硬化症的全面、基于证据的营养信息资源（NUTRIMS）。
采用了包含三个连续阶段的混合方法设计：（1）需求评估与开发：与pwMS进行两个焦点小组讨论，以探索他们在饮食方面的经历、信息需求和偏好的支持方式。制定NUTRIMS草案，（2）可行性步骤1：收集利益相关者对NUTRIMS草案的反馈，以及（3）可行性步骤2：对pwMS进行在线调查，以探索内容质量和可接受性。
两个焦点小组共12名pwMS表明，关于食物类别/成分、营养素和特殊饮食的多发性硬化症特异性证据最受关注。通过13名利益相关者的反馈对NUTRIMS草案进行了完善。最终版之前的NUTRIMS包括81页，其中有每个主题的科学参考文献、16幅插图和术语表。85名pwMS参与了在线调查，报告称对该信息资源使用频繁且满意度高，该资源被认为易于理解、高度可信且对做出饮食改变的决策有用。
一种合作研究方法产生了一个广受认可的营养信息资源。
