Pain in Hidradenitis Suppurativa: Adolescent Phenotypes and Perspectives

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Project Summary/Abstract Candidate: This competitive revision to a K23 career development award will prepare Lauren Orenstein, MD, MSc to conduct studies in adolescent patients with hidradenitis suppurativa (HS), a chronic inflammatory skin disease characterized by recurrent painful scarring abscesses. She will adapt techniques to understand their pain mechanisms and develop recommendations for targeted interventions to reduce adolescents’ pain and prevent progression to chronic opioid use. In addition to the career development objectives of her original K23, this revision provides mentored experience in multi-site recruitment, research in pediatric populations, and adolescent stakeholder engagement. Mentoring and Environment: In addition to her internationally renowned K23 mentorship team, this competitive revision will add mentorship in pediatric research and adolescent populations from Leslie Lawley, MD (expertise: pediatric dermatology, validating study instruments in pediatric populations). It will also establish relationships with community pediatric dermatologists, gynecologists, and surgeons for multi- site study recruitment. She will continue her ongoing relationships with K23 primary mentors (Rachel Patzer, PhD MPH and Dio Kavalieratos, PhD), other co-mentors (Suephy Chen, MD MS, Amit Garg, MD, and Daniel Harper, PhD), and consultants (John Ingram, MA MSc DM FRCP FAcadMedEd, Kimberly Curseen, MD, and Anne-Marie McKenzie-Brown, MD). Research: This research aims to address knowledge gaps related to HS pain in adolescents and develop recommendations for family-centered interventions to alleviate pain and prevent long-term opioid use. Specific Aims: An ongoing 16-week prospective cohort study in adults will be adapted for adolescents aged 12-17 years who have moderate-to-severe HS. Comprehensive assessments, including clinical disease activity, systemic inflammation, and sensory profiles using quantitative sensory testing, will be used to characterize HS pain mechanisms in adolescents compared to adults, identify pain trajectories, and optimize pain measurement in adolescents for clinical trials. In a separate study, semi-structured interviews with adolescents and their parents/guardians will explore unmet needs in HS pain management. These data will inform a Stakeholder Panel consisting of adult and adolescent HS patients, care partners, community advocates, and experts in HS, palliative care, and pain management. The panel will use Intervention Mapping to develop recommendations for designing and evaluating complex interventions aimed at addressing pain and suffering in adults and adolescents with HS. This study represents one of the first prospective cohorts of adolescents with HS. It will yield an engaged stakeholder panel with the preliminary data needed for intervention development in future R01 grant proposals focusing on a unique window of opportunity in adolescence to prevent progression to chronic opioid dependence.