490 - Stigma and Continuity of Headache Care During Transition to Adulthood: A Qualitative Study of Young Adults and Healthcare Professionals

Publication Number: 1470.490

Richelle deMayo, University of Connecticut School of Medicine, Westport, CT, United States; Emily Wakefield, Connecticut Children's/University of Connecticut School of Medicine, Hartford, CT, United States; Katherine A. Hinderer, Connecticut Children's Medical Center, Hartford, CT, United States; Constandina Conley, Connecticut Children’s, Farmington, CT, United States; Carissa DelGaudio, Connecticut Children's Medical Center, Hartford, CT, United States; Richard Young, University of Connecticut School of Medicine, Farmington, CT, United States

Background: Transition to adult healthcare is a high-impact developmental process poorly supported by health systems despite decades of consensus guidance. Migraine and other headache disorders are a leading cause of care-sensitive disability in young adults worldwide. Headache's ubiquity in the general population contributes to misconceptions that transition planning for these conditions is unnecessary, contradicting evidence of substantial impact on quality of life, education, and employment.

Objective: We aimed to define key dimensions of headache transition care; examine alignment between perspectives of emerging adults and pediatric subspecialists; and evaluate need for headache-specific transition interventions.

Design/Methods: This qualitative sub-analysis of an IRB-exempt mixed-methods observational study of headache care in young people included open-ended survey data from 207 U.S. adults aged 18-25 with recurrent headache recruited through Prolific (83.5% response) and semi-structured interviews with 10 pediatric neurology and pain medicine specialists from a New England health system. Survey data (>1000 free text comments) and interview transcripts were coded inductively using reflexive thematic analysis to identify essential priorities, barriers, and enablers of headache transition. Findings were compared with the Six Core Elements of Healthcare Transition framework.

Results: Almost one third (60/207, 29.0%) of survey respondents (median age 23; 65.7% female; 64.7% non-White) had no health provider caring for their headache. Stigma emerged as a pervasive and clinically under-acknowledged influence shaping headache care transition. Nearly half (92/206, 44.6%) of survey participants reported their pain had been doubted or dismissed by healthcare professionals, yet clinicians did not describe stigma as a salient barrier until explicitly prompted. Three aspects of transition care were identified as essential by both groups: cooperative steering (multi-party agency and accountability), adaptive routing (flexible patient- and condition-specific pathways), and shared signals (jointly accessible core information). Unaddressed by existing frameworks, stigma undermined all three by eroding therapeutic relationships, delaying care-seeking, spurring provider switching, and diminishing treatment confidence when headache was delegitimized as a neurologic condition.

Conclusion(s): Widespread stigma threatens care continuity for young adults with headache disorders and is overlooked in transition planning. Findings support development of headache-specific transition interventions addressing stigma awareness and reduction.

Stigma Transforms Essential Dimensions of Transition
Figure 1

Essential Requirements for Headache Care Transition and Six Core Elements Framework Alignment
Table 1