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本文引用的文献

1
Diet and multiple sclerosis - development and mixed methods feasibility testing of a comprehensive nutritional information resource (NUTRIMS).饮食与多发性硬化症——综合营养信息资源(NUTRIMS)的开发与混合方法可行性测试
Disabil Rehabil. 2025 Apr;47(8):1988-1999. doi: 10.1080/09638288.2024.2388259. Epub 2024 Sep 1.
2
Feasibility of a co-designed online nutrition education program for people with multiple sclerosis.多发性硬化症患者联合设计的在线营养教育方案的可行性。
Mult Scler Relat Disord. 2024 Oct;90:105816. doi: 10.1016/j.msard.2024.105816. Epub 2024 Aug 12.
3
Health behaviors of people with multiple sclerosis and its associations with MS related outcomes: a German clinical cohort.多发性硬化症患者的健康行为及其与多发性硬化症相关结局的关联:一项德国临床队列研究。
Front Neurol. 2023 Sep 13;14:1172419. doi: 10.3389/fneur.2023.1172419. eCollection 2023.
4
A collaborative approach to designing an online nutrition education program for people with multiple sclerosis.协作设计多发性硬化症患者在线营养教育计划的方法。
Disabil Rehabil. 2024 Mar;46(5):947-956. doi: 10.1080/09638288.2023.2186499. Epub 2023 Mar 12.
5
Association of obesity with disease outcome in multiple sclerosis.肥胖与多发性硬化疾病结局的关联。
J Neurol Neurosurg Psychiatry. 2023 Jan;94(1):57-61. doi: 10.1136/jnnp-2022-329685. Epub 2022 Nov 1.
6
Efficacy of Diet on Fatigue and Quality of Life in Multiple Sclerosis: A Systematic Review and Network Meta-analysis of Randomized Trials.饮食对多发性硬化症疲劳和生活质量的影响:系统评价和随机试验的网络荟萃分析。
Neurology. 2023 Jan 24;100(4):e357-e366. doi: 10.1212/WNL.0000000000201371. Epub 2022 Oct 18.
7
The Role of Diet in Multiple Sclerosis: Food for Thought.饮食在多发性硬化症中的作用:值得思考的问题。
Neurology. 2023 Jan 24;100(4):167-168. doi: 10.1212/WNL.0000000000201565. Epub 2022 Oct 18.
8
Desired Resources for Changing Diet Among Persons With Multiple Sclerosis: Qualitative Inquiry Informing Future Dietary Interventions.多发性硬化症患者改变饮食所需资源:为未来饮食干预提供信息的定性研究
Int J MS Care. 2022 Jul-Aug;24(4):175-183. doi: 10.7224/1537-2073.2021-052. Epub 2021 Oct 28.
9
Multiple sclerosis incidence: A systematic review of change over time by geographical region.多发性硬化症发病率:按地理区域随时间变化的系统评价。
Mult Scler Relat Disord. 2022 Jul;63:103932. doi: 10.1016/j.msard.2022.103932. Epub 2022 May 29.
10
Self-reported behaviour change among multiple sclerosis community members and interested laypeople following participation in a free online course about multiple sclerosis.参与关于多发性硬化症的免费在线课程后,多发性硬化症社区成员及相关普通民众自我报告的行为变化。
Health Promot J Austr. 2022 Jul;33(3):768-778. doi: 10.1002/hpja.559. Epub 2021 Dec 13.

多发性硬化症患者的营养知识与食品素养——患者报告结局指标的开发与验证

Nutrition Knowledge and Food Literacy Among Persons with Multiple Sclerosis-Development and Validation of Patient-Reported Outcome Measures.

作者信息

Riemann-Lorenz Karin, Seddiq Zai Susan, Daubmann Anne, Pöttgen Jana, Heesen Christoph

机构信息

Institute of Neuroimmunology and Multiple Sclerosis (INIMS), University Medical Center Hamburg-Eppendorf, 20251 Hamburg, Germany.

Institute of Medical Biometry and Epidemiology, University Medical Center Hamburg-Eppendorf, 20251 Hamburg, Germany.

出版信息

Nutrients. 2024 Nov 26;16(23):4043. doi: 10.3390/nu16234043.

DOI:10.3390/nu16234043
PMID:39683437
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC11643976/
Abstract

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, < 0.001), but only small with the MSNKQ (r = 0.180; = 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.

摘要

背景/目的:多发性硬化症患者(pwMSs)常常面临相互矛盾的饮食建议,而这些建议并非总是基于可靠的科学证据。这可能导致患者对多发性硬化症特定的营养知识(MSNK)和食物素养(MSFL)掌握不足。迄今为止,尚无研究评估pwMSs的MSNK和MSFL。此外,也没有经过验证的工具来衡量教育干预的效果。本研究的目的是开发并验证用于测量pwMSs的MSNK和MSFL的多发性硬化症特定工具。

方法

基于一份经过验证的针对普通人群的食物素养(FL)筛选工具以及先前关于pwMSs信息需求的研究,我们编制了14个MSFL项目和11个多发性硬化症特定的营养知识问题。对10名pwMSs进行了认知访谈,并由此形成了一份包含12个项目的多发性硬化症食物素养问卷(MSFLQ)和一份包含11个项目的多发性硬化症营养知识问卷(MSNKQ)。经过完善后,两份问卷在一项在线调查中进行了预测试,以探究其可理解性。对MSNKQ进行描述性分析(正确回答问题的平均数和百分比)。对于MSFLQ,评估了项目难度、项目的区分度、内部一致性以及收敛/发散效度。

结果

共有148名pwMSs(年龄:47.1岁(标准差 = 12.5);102名女性(69%))完成了在线调查。参与者平均正确回答了3.51/11个MSNK问题(31.9%)。MSFLQ显示出良好的内部一致性(克朗巴哈系数 = 0.85),项目难度适宜,项目的区分度令人满意。MSFLQ与一份普通食物素养问卷之间的相关性较高(r = 0.626,P < 0.001),但与MSNKQ的相关性较小(r = 0.180;P = 0.029),这凸显了不同的结构。

结论

德国pwMSs的MSNK水平较低。MSNKQ和MSFLQ似乎是评估MSNK和MSFL的合适工具,并且可能用作教育干预的结果指标。