Bruce Susan, Devlin Anita, Air Linda, Cook Lucy
Newcastle Upon Tyne Hospitals Trust, Queen Victoria Road, NE14LP Newcastle, United Kingdom.
Newcastle Upon Tyne Hospitals Trust, Queen Victoria Road, NE14LP Newcastle, United Kingdom.
Epilepsy Behav. 2017 Jan;66:100-104. doi: 10.1016/j.yebeh.2016.10.001. Epub 2016 Dec 27.
There are difficulties inherent in measuring Quality of life (QoL) in patients with chronic illness, including agreement on definitions of quality of life and the type of measure used, disease specific or generic. Well validated QoL instruments for epilepsy exist but focus on capturing common themes pertinent to children and families as a group instead of focusing on themes important to individual patients and their families/carers. In addition, it is common for numerous items on these inventories to be left incomplete or responded to with "not applicable" since many of the items are not suitable for children with disabilities and their families. This led us to devise a way to capture individual quality-of-life measures that are linked to parental/carer expectations in families of children undergoing ketogenic diet therapy for epilepsy. As part of our routine clinical assessment, parents/carers were asked to describe what they would like to see happen or change as a result of their child being on ketogenic diet therapy. A simple unstructured form was designed to facilitate the assessment process. Parents were then asked to rate their own QoL against these criteria on a Likert scale of 0-10 prior to commencement of the diet. This assessment was repeated at subsequent visits with parents/carers initially blinded to their original responses. Our assessments indicated that ketogenic diet therapy improves quality of life over a twelve-month period when measured against parental expectations. This ideographic approach has demonstrated changes in parental Qol and parental perceptions of their child's quality of life that would not have been captured by other validated measures. A lengthy questionnaire is avoided and is replaced by a skilled supportive conversation that identifies goals for treatment that are important to parents. This helps parents to reflect on the progress their child makes on the diet by revisiting their previously stated aspirations, and assessing whether they have been achieved. This is particularly helpful for those parents who express a sense of failure or helplessness relating to their child's intractable epilepsy. As a result, future work will center on developing this approach as a clinical tool.
对慢性病患者的生活质量（QoL）进行测量存在一些内在困难，包括在生活质量的定义以及所使用的测量类型（疾病特异性或通用型）上达成一致。虽然存在经过充分验证的癫痫生活质量测量工具，但这些工具侧重于捕捉与儿童及其家庭群体相关的共同主题，而非关注对个体患者及其家庭/照料者重要的主题。此外，这些量表上的许多项目常常未填写完整或被回答为“不适用”，因为其中许多项目不适用于残疾儿童及其家庭。这促使我们设计一种方法来获取与接受癫痫生酮饮食治疗的儿童家庭中父母/照料者期望相关的个体生活质量测量值。作为我们常规临床评估的一部分，我们要求父母/照料者描述他们希望看到因孩子接受生酮饮食治疗而发生的事情或改变。我们设计了一种简单的非结构化表格以促进评估过程。然后要求父母在饮食开始前根据这些标准在0至10的李克特量表上对自己的生活质量进行评分。在随后的随访中，再次对父母/照料者进行此项评估，最初他们对自己的原始回答不知情。我们的评估表明，与生酮饮食治疗开始时父母的期望相比，在十二个月的时间里，生酮饮食治疗改善了生活质量。这种个性化方法显示出父母生活质量以及父母对其孩子生活质量认知的变化，而这些变化是其他经过验证的测量方法所无法捕捉到的。我们避免了冗长的问卷，取而代之的是通过一次有技巧的支持性谈话来确定对父母来说重要的治疗目标。这有助于父母通过回顾他们之前表达的愿望并评估这些愿望是否实现，来反思孩子在饮食治疗上取得的进展。这对那些因孩子难治性癫痫而表达出失败感或无助感的父母特别有帮助。因此，未来的工作将围绕把这种方法发展成为一种临床工具展开。
