Pain in Hidradenitis Suppurativa: Phenotypes and Stakeholder Perspectives

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PROJECT SUMMARY/ABSTRACT Candidate: This K23 career development award will prepare Lauren Orenstein, MD MS to understand pain mechanisms and trajectories in hidradenitis suppurativa (HS) in order to develop and evaluate targeted interventions that reduce pain and improve quality of life (QoL) in serious skin diseases. Through this K23, she will pursue three career development objectives: (1) develop expertise in the conduct and statistical analysis of prospective studies, (2) obtain skills in mixed methods, and (3) gain practical experience in stakeholder engaged research for intervention development and evaluation. Mentoring and Environment: Dr. Orenstein has assembled an internationally renowned mentor team with complementary expertise and an outstanding track record of mentoring junior investigators. Her primary mentors are: Rachel Patzer, PhD MPH (expertise: prospective study design, statistical techniques, outcome validation, health services research) and Dio Kavalieratos, PhD (expertise: mixed methods, stakeholder-engaged research, design and evaluation of complex behavioral and health systems interventions). Her co-mentors are: Suephy Chen, MD MS (patient-reported outcomes in skin disease), Amit Garg, MD (HS epidemiology and outcome metrics) and Daniel Harper, PhD (pain mechanisms and quantitative sensory testing). Consultants include: John Ingram, MA MSc DM FRCP FAcadMedEd (pain measurement in HS), Kimberly Curseen, MD (palliative care), Anne-Marie McKenzie-Brown, MD (pain management), and Dong Li MD, MD PhD (biostatistics). As an Assistant Professor of Dermatology, Dr. Orenstein will have access to the Dermatology Center for Outcomes Research and Safety unit and the resources and institutional capital of Emory School of Medicine. Research: HS is a chronic inflammatory skin disease affecting ~0.4% of adults that causes recurrent, painful scarring abscesses leading to poor QoL. Pain is rated by HS patients as their most important symptom, yet little is known about its mechanisms, trajectory, best practices for measuring HS pain, or effective treatments. Specific Aims: In a prospective cohort study, we will identify HS pain mechanisms, determine the influence of pain mechanisms on pain interference with daily activities, establish HS pain trajectory patterns, and optimize HS pain measurement for clinical trials. In a separate study, we will use a mixed methods design to understand domains of suffering, unmet pain needs, and pain care preferences in HS patients and their care partners. We will present these data to a stakeholder panel consisting of HS patients, community advocates, and clinical experts who will use Intervention Mapping techniques to generate recommendations for designing and evaluating complex intervention(s) that reduce pain in HS. The proposed research will provide Dr. Orenstein with the preliminary data and training to apply for an R01 focused on HS pain mechanisms and an R21 and subsequent R01 to develop, pilot, and evaluate complex interventions to mitigate pain and suffering in HS.