What do people want to know about "Growing Up with Migraine"? Results of a preference survey of people with lived experience to guide future research.

Abstract

In recent years, emphasis has been placed on conducting headache research that is patient-centered to more explicitly incorporate the input of people who live with headache diseases. The Growing Up with Migraine Study was developed with this intention using a two-step process: 1. develop and administer a survey to identify research areas that matter most to people with adolescent migraine and/or their caregivers and 2. use the survey results to guide future secondary data analyses. This brief report summarizes the survey results from 373 individuals impacted by adolescent migraine. Findings suggested that people with history of adolescent migraine and/or their caregivers are most interested in research about migraine comorbidities and effects on psychological/social/emotional health, along with health-related outcomes and family-related topics. Future quantitative studies are planned that will explore these patient-identified priorities through secondary data analysis of an existing dataset.