Patient headache questionnaires can improve headache diagnosis and treatment in children

Abstract

ObjectiveTo examine trends in diagnosis of headache and migraine in a large pediatric neurology cohort, and test whether an electronic health record (EHR)‐integrated headache questionnaire can increase specificity of diagnosis and likelihood of prescribing migraine treatment.BackgroundUnder‐diagnosis of migraine contributes to the burden of disease. As we founded our Pediatric Headache Program in 2013, we recognized that the proportion of patients with headache who were given a diagnosis of migraine was much lower than expected.MethodsWe developed a patient headache questionnaire, initially on paper (2013–2014), then in an electronic database (2014–2016), and finally integrated into our electronic health record (pilot: 2016, full: May 2017). We compared diagnoses and prescribed treatments for new patients who were given a headache diagnosis, looking at trends in the proportion of patients given specific diagnoses (migraine, etc.) versus the non‐specific diagnosis, “headache.” Next, we conducted a prospective cohort study to test for association between provider use of the form and the presence of a specific diagnosis, then for an association between specific diagnosis and prescription of migraine treatment.ResultsBetween July 2011 and December 2022 the proportion of new headache patients who were given a diagnosis of migraine increased 9.7% and non‐specific headache diagnoses decreased 21.0%. In the EHR cohort (June 2017–December 2022, n = 15,122), use of the provider form increased the rate of specific diagnosis to 87.2% (1839/2109) compared to 75.5% (5708/7560) without a patient questionnaire, nearly doubling the odds of making a specific diagnosis (odds ratio [OR] 1.90, 95% confidence interval [CI]: 1.65–2.19). Compared to those given only a non‐specific headache diagnosis who were prescribed a migraine therapy 53.7% (1766/3286) of the time, 75.3% (8914/11836) of those given a specific diagnosis received a migraine therapy, more than doubling the odds of prescription (OR 2.39, 95% CI: 2.20–2.60).ConclusionsInterventions to improve specificity of diagnosis were effective and led to increased rates of prescription of migraine treatments. These results have been sustained over several years. This headache questionnaire was adapted into the Foundation system of EpicCare, so it is broadly available as a clinical and research tool for institutions that use this EHR software.

Headache in Children and Adolescents

“…Many pediatric headache practices use standardized questionnaires to elicit the history from children and adolescents with headache disorders, and these may serve as a guidepost for semistructured headache interviews. Evidence shows that standardized headache questionnaires can improve diagnostic specificity, 47 although, when used in isolation, they have lower sensitivity than clinical diagnoses 48 and thus must be supported with semistructured interviews to maximize diagnostic accuracy.…”

Symptoms associated with headache in youth

“…Questionnaires that were excluded based on missing data generally came from patients with similar demographics, but they were more likely to be Black, which indicates this group was underrepresented in our cohort compared to the broader community served by The Children's Hospital of Philadelphia neurology, introducing a potential source of bias. This has been linked to differences in completion rates by clinic site (36). This is an important disparity that our group is working to address, and we have made some progress in rates of headache questionnaire completion.…”