Outcomes That Matter to Adolescents With Continuous Headache Due to Chronic Migraine and Their Parents: A Pilot Survey Study.

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.