Schoeler Natasha E, MacDonald Lindsay, Champion Helena, Cross J Helen, Sander Josemir W, Sisodiya Sanjay M, Horne Rob
NIHR University College London Hospitals Biomedical Research Centre, Department of Clinical and Experimental Epilepsy, UCL Institute of Neurology, London WC1N 3BG, UK; UCL Institute of Child Health, Great Ormond Street Hospital for Children, London WC1N 1EH, UK.
Centre for Behavioural Medicine, Department of Practice and Policy, UCL School of Pharmacy, London WC1H 9JP, UK.
Epilepsy Behav. 2014 Oct;39:1-5. doi: 10.1016/j.yebeh.2014.07.020. Epub 2014 Aug 19.
We aimed to assess and quantify parental beliefs regarding ketogenic dietary therapies (KDTs). We also aimed to determine whether beliefs were related to response to KDTs. Adapted versions of the Beliefs about Medicine Questionnaire were completed by parents of children following KDTs for epilepsy. Demographic and clinical data were collected from hospital records. Ketogenic dietary therapy response was defined as ≥50% seizure reduction compared to baseline. Many parents had a positive perception of KDTs and were convinced of the necessity of KDTs for their children, although beliefs were wide-ranging. Over half of parents reported concerns about the potential long-term effects of KDTs. Parental beliefs about KDTs were significantly correlated with patient response. This was an attempt to quantify parents' beliefs regarding the use of KDTs for their child's epilepsy. The questionnaire may be used to identify individuals with a less positive attitude towards KDTs and who may be less likely to report a favorable response to KDTs. It is unknown whether people who have positive beliefs about KDTs engage in less nonadherent behavior or whether beliefs regarding KDTs simply reflect outcomes. The evidence behind the long-term side effects of KDTs should be emphasized when counseling patients and their families.
我们旨在评估和量化家长对生酮饮食疗法(KDTs)的看法。我们还旨在确定这些看法是否与生酮饮食疗法的疗效相关。采用《医学信念问卷》的改编版本,由接受KDTs治疗癫痫的儿童的家长填写。从医院记录中收集人口统计学和临床数据。生酮饮食疗法的疗效定义为与基线相比癫痫发作减少≥50%。许多家长对KDTs持积极看法,并确信其对孩子的必要性,尽管看法各不相同。超过半数的家长报告担心KDTs的潜在长期影响。家长对KDTs的看法与患者疗效显著相关。这是一次量化家长对使用KDTs治疗孩子癫痫看法的尝试。该问卷可用于识别对KDTs态度不太积极、可能不太可能报告对KDTs有良好疗效的个体。尚不清楚对KDTs有积极看法的人是否较少出现不依从行为,或者对KDTs的看法是否仅仅反映了治疗结果。在为患者及其家属提供咨询时,应强调KDTs长期副作用背后的证据。