Outcomes That Matter to Adolescents With Continuous Headache Due to Chronic Migraine and Their Parents A Pilot Survey Study
Outcomes That Matter to Adolescents With Continuous Headache Due to Chronic Migraine and Their Parents A Pilot Survey Study
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DOI：
10.1212/wnl.0000000000200292
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发表时间：
2022-06-07
期刊：
影响因子：
9.9
通讯作者：
Gelfand, Amy
中科院分区：
文献类型：
--
作者：
Morris, Cynthia;Ross, Alexandra;Gelfand, Amy
背景和目的患有慢性偏头痛且持续头痛的儿童和青少年可能患有高度头痛相关的残疾，但在很大程度上被排除在临床试验之外。了解患者价值的治疗结果可能有助于未来的研究设计。这项工作的目的是确定患者价值的结果措施，头痛预防治疗的青少年持续头痛，由于慢性偏头痛和他们的父母。方法对患有国际头痛疾病分类（第3版）慢性偏头痛的青少年进行调查，这些青少年患有持续性头痛，并在三级儿科头痛诊所接受治疗，他们的父母被调查，以询问头痛频率，强度，功能影响和相关症状的治疗结果。使用加权平均等级，按照偏好顺序对个体结局和结局类别进行排序。将结果四舍五入至测量的精密度。结果：55名青少年和60名青少年的父母因慢性偏头痛而持续头痛完成了调查。青少年的平均年龄为16岁（SD 1，范围12-17）。报告的持续性头痛的中位持续时间为24个月（四分位距[IQR] 12-39），青少年尝试了中位2种（IQR 0-5）预防药物，其中只有13%被认为是有帮助的。总体而言，青少年和父母最重视的个人结局指标是更严重头痛的频率降低;然而，反映头痛强度的结局最受青少年重视，而反映功能影响的结局最受父母重视。超过60%的青少年认为，更重要的是衡量严重头痛/尖峰，而不是总头痛天的频率和强度的下降。在相关症状中，青少年和家长最重视脑雾的改善。讨论本研究的结果提供了重要的信息，预防性治疗的结果是由青少年持续头痛，由于慢性偏头痛和他们的父母的价值。结果表明，青少年重视严重头痛的频率下降，而不是头痛天数的频率下降。由于被调查人群在三级儿科头痛诊所接受治疗，并且通常患有难治性头痛疾病，因此普遍性可能有限。这些结果可能有助于指导未来的试验设计，在这一人群中持续头痛由于慢性偏头痛。
Background and Objectives Children and adolescents with chronic migraine who have continuous headache may have high levels of headache-related disability but have largely been excluded from clinical trials. Understanding patient-valued treatment outcomes may facilitate future study design. The aim of this work was to identify patient-valued outcome measures for headache preventive treatments among adolescents with continuous headache due to chronic migraine and their parents. Methods Adolescents with an International Classification of Headache Disorders, 3rd edition diagnosis of chronic migraine, who had continuous headache and who were being cared for at a tertiary pediatric headache clinic, and their parents were surveyed to query the value of treatment outcomes in the domains of headache frequency, intensity, functional impact, and associated symptoms. Individual outcomes and categories of outcomes were ranked in order of preference using weighted average rank. Results were rounded to the degree of precision with which they were measured. Results The survey was completed by 55 adolescents and 60 parents of adolescents with continuous headache due to chronic migraine. Mean age of adolescents was 16 (SD 1, range 12-17) years. Median adolescent-reported duration of continuous headache was 24 (interquartile range [IQR] 12-39) months, and adolescents had tried a median of 2 (IQR 0-5) preventive medications, only 13% of which were perceived as helpful. Overall, the most valued individual outcome measure among both adolescents and parents was a decrease in frequency of more severe headaches; however, outcomes reflecting headache intensity were most valued by adolescents, while outcomes reflecting functional impact were most valued by parents. More than 60% of adolescents felt that it was more important to measure decrease in frequency and intensity of headaches in terms of severe headaches/spikes rather than total headache days. Among associated symptoms, improvement in brain fog was most highly valued by both adolescents and parents. Discussion The results of this study provide important information about which preventive treatment outcomes are valued by adolescents with continuous headache due to chronic migraine and their parents. Results suggest that adolescents value a decrease in frequency of severe headaches over a decrease in frequency of headache days overall. Generalizability may be limited because the surveyed population was being cared for at a tertiary pediatric headache clinic and generally had headache disorders that were refractory to treatment. These results may help guide future trial design in this population with continuous headache due to chronic migraine.