关键词: McArdle disease carbohydrate clinical practice guidelines exercise patient experience sucrose

Mesh : Humans Glycogen Storage Disease Type V / therapy Dietary Carbohydrates / administration & dosage Male Exercise Female Adult Middle Aged Surveys and Questionnaires Exercise Tolerance Aged Young Adult

来  源:   DOI:10.3390/nu16101423   PDF(Pubmed)

Abstract:
In individuals with McArdle disease (IWMD), the ingestion of carbohydrates before exercise has previously been shown in laboratory studies to significantly decrease the exercising symptoms of the condition and increase exercise tolerance during the early stages of exercise. As a result, carbohydrate ingestion pre-exercise is currently included in management guidelines, and often advised by medical professionals treating the condition. The aim of the current study was to determine whether positive lab-based results for the ingestion of carbohydrate before exercise in laboratory studies are being effectively translated into practice and produce perceptions of the same positive outcomes in real-world settings (RWS). An online survey method was used to collect responses from 108 IWMD. Data collected on the amount and type of carbohydrate consumed prior to exercise found that most surveyed participants (69.6%) who supplied qualitative data (n = 45) consumed less than the 37 g currently recommended in management guidelines. Survey data also revealed a large variation in the type and amount of carbohydrate ingested when IWMDs are applying carbohydrate ingestion before exercise in RWS. Consistent with these findings, only 17.5% of participants stated that they found carbohydrate ingestion before exercise relieved or minimised their MD symptoms. Results suggest that positive lab-based findings (increased exercise tolerance) of carbohydrate ingestion before exercise are not being effectively translated to RWS for many IWMD. There is a need for improved patient education of IWMD on the application of carbohydrate ingestion before exercise in RWS.
摘要:
在患有McArdle病(IWMD)的个体中,先前在实验室研究中已经证明,运动前摄入碳水化合物可以显着减轻运动症状,并在运动的早期阶段增加运动耐量。因此,运动前碳水化合物摄入目前包括在管理指南中,并经常由医疗专业人员建议治疗这种疾病。本研究的目的是确定在实验室研究中运动前摄入碳水化合物的基于实验室的阳性结果是否被有效地转化为实践,并在现实世界中产生相同的阳性结果(RWS)。使用在线调查方法收集了108个IWMD的回复。关于运动前消耗的碳水化合物的数量和类型收集的数据发现,提供定性数据(n=45)的大多数接受调查的参与者(69.6%)的消耗低于管理指南中目前建议的37克。调查数据还显示,当IWMD在RWS运动前应用碳水化合物摄入时,摄入的碳水化合物的类型和数量存在很大差异。与这些发现一致,只有17.5%的参与者表示,他们发现在运动前摄入碳水化合物可以缓解或最小化他们的MD症状.结果表明,对于许多IWMD,运动前碳水化合物摄入的基于实验室的阳性发现(运动耐量增加)并未有效地转化为RWS。在RWS运动前应用碳水化合物摄入方面,需要改善IWMD的患者教育。
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