40 - Transition to Adult Care for Headache Disorders: Cross-National Insights from a Mixed-Methods Study

Publication Number: 3037.40

Richelle deMayo, University of Connecticut School of Medicine, Westport, CT, United States; Katherine A. Hinderer, Connecticut Children's Medical Center, Hartford, CT, United States; Emily Wakefield, Connecticut Children's/University of Connecticut School of Medicine, Hartford, CT, United States; Carissa DelGaudio, Connecticut Children's Medical Center, Hartford, CT, United States; Amirul Anuar, Connecticut Children's Medical Center, Hartford, CT, United States

Background: Migraine and other headache disorders are a leading source of global disability. Young adulthood is a vulnerable period, when emerging independence and life changes intersect with rising headache burden. The transition from pediatric to adult healthcare is a pivotal juncture for effective management to preserve function and protect against disease progression.

Objective: We sought to examine how disease burden and stigma shape healthcare transition success for headache disorders as both neurologic and chronic pain conditions, with purposive attention to non-White and gender-diverse populations who face heightened risk for care discontinuity.

Design/Methods: We conducted a convergent mixed-methods online survey of young adults aged 18-25 in the United States, United Kingdom, and Canada, recruited through Prolific. Of 784 participants screened, 309 reported recurrent headache, and 260 (84.1%) completed standardized measures including the Headache Impact Test (HIT-6) and Migraine-Related Stigma Questionnaire (MiRS) along with open-ended items on transition care experience, yielding more than 1,000 free-text comments. Multivariable logistic regression identified factors associated with a source of headache care; narrative thematic analysis characterized manifestations of stigma across care trajectories. The study was deemed exempt by the institutional IRB.

Results: Respondents (median age 23 [IQR 22-24], 67.3% female; 67.7% non-White, 58.1% migraine) had a median of 7 [IQR 5-12] monthly headache days, with 73.1% experiencing substantial-to-severe functional impact. Overall, 31.5% lacked a headache provider. Nearly half (45.4%) reported their pain had been doubted or disregarded by healthcare professionals. In multivariable modeling, received transition services (aOR 2.17, 95% CI 1.71-2.84), achieved transition skills (aOR 1.38, 95% CI 1.12-1.71), and perceived headache burden minimization by others (aOR 1.12, 95% CI 1.01-1.25) were associated with having a headache provider (pseudo R²=0.30). While stigma was independently and paradoxically associated with having an identified headache provider, qualitative analysis revealed its detrimental role in transition: compromising therapeutic alliance, contributing to unstable clinical care relationships, and undermining trust in treatment plans.

Conclusion(s): Many individuals with functionally impactful headache disorders fail to establish stable adult care. Pervasive stigma undermines continuity. Findings demonstrate underuse of structured transition frameworks and call for embedded stigma-focused strategies across healthcare systems.

Study Participants: Demographic and Clinical Characteristics
Table 1

Transition Preparation, Stigma and Adult Headache Care Engagement
Figure 1

Stigma Specific Themes in Young Adult Headache Care Transition
Table 2