Carlyn Patterson Gentile

Objective To 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. Background Under‐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. Methods We 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. Results Between 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). Conclusions Interventions 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.

Objective To determine the underlying relationships between a broad range of headache-associated symptoms and how they relate to headache burden. Background Symptoms associated with head pain inform classification of headache disorders. However, many headache-associated symptoms are not included in the diagnostic criteria, which is largely based on expert opinion. Large symptom databases can assess headache-associated symptoms irrespective of pre-existing diagnostic categories. Methods We conducted a large single-center cross-sectional study on youth (6–17 years old) assessing patient-reported outpatient headache questionnaires between June 2017 and February 2022. Multiple correspondence analysis, an exploratory factor analysis, was applied to 13 headache-associated symptoms. Results 6662 participants (64% female; median age 13.6 years) were included. Multiple correspondence analysis dimension 1 (25.4% of the variance) captured the absence or abundance of headache-associated symptoms. A greater number of headache-associated symptoms correlated with greater headache burden. Dimension 2 (11.0% of the variance) revealed three symptom clusters: (1) cardinal features of migraine (light, sound, and smell sensitivity, nausea, and vomiting), (2) nonspecific global neurologic dysfunction symptoms (lightheadedness, trouble thinking, blurry vision), (3) vestibular and brainstem dysfunction symptoms (vertigo, balance problems, ear ringing, double vision). Conclusion Assessing a broader range of headache-associated symptoms reveals clustering of symptomatology and a strong relationship with headache burden.