Pain in Hidradenitis Suppurativa: Phenotypes and Stakeholder Perspectives

项目摘要/摘要 候选人：这项K23职业发展奖将帮助医学博士劳伦·奥伦斯坦了解 化脓性汗腺炎(HS)的疼痛机制和运动轨迹研究 针对严重皮肤病患者减轻疼痛、提高生活质量的针对性干预措施。穿过 今年K23，她将追求三个职业发展目标：(1)在行为上发展专业知识 和前瞻性研究的统计分析，(2)在混合方法中获得技能，以及(3)获得实用性 在利益相关者参与的干预开发和评估研究方面的经验。 指导和环境：奥伦斯坦博士召集了一位国际知名的导师 团队具有互补的专业知识，并在指导初级调查人员方面有出色的记录。 她的主要导师是：Rachel Patzer博士，公共卫生硕士(专业知识：前瞻性研究设计，统计学 技术、结果验证、卫生服务研究)和Dio Kavalieratos博士(专长： 混合方法，利益相关者参与的研究，设计和评估复杂的行为和 卫生系统干预)。她的共同导师是：苏菲·陈，医学硕士(患者报告的结果 Amit Garg医学博士(HS流行病学和结果指标)和Daniel Harper博士 (疼痛机制和定量感觉测试)。顾问包括：约翰·英格拉姆，硕士硕士 FRCP FAcademy MedED(HS疼痛测量)，Kimberly Cursee，MD(姑息治疗)，Anne-Marie 麦肯齐-布朗医学博士(疼痛管理)和董力医学博士(生物统计学)。作为助理 皮肤科教授，奥伦斯坦博士将可以进入皮肤科中心了解结果 研究和安全部门以及埃默里医学院的资源和机构资本。 研究：HS是一种慢性炎症性皮肤病，影响约0.4%的成年人，会导致反复疼痛 形成疤痕的脓肿导致不良的生活质量。疼痛被HS患者列为他们最重要的症状，但 人们对其机制、轨迹、测量HS疼痛的最佳实践或有效治疗知之甚少。 具体目标：在一项前瞻性队列研究中，我们将确定HS疼痛的机制，确定 疼痛机制对疼痛日常活动的干扰，建立HS疼痛轨迹模式，并优化 用于临床试验的HS疼痛测量。在另一项单独的研究中，我们将使用混合方法设计来理解 HS患者及其护理伙伴的痛苦、未满足的疼痛需求和疼痛护理偏好的领域。我们 将把这些数据提交给由HS患者、社区倡导者和临床医生组成的利益相关者小组 将使用干预映射技术生成设计和设计建议的专家 评估减轻HS患者疼痛的综合干预(S)。拟议中的研究将为奥伦斯坦博士提供 通过初步数据和培训，申请专注于HS疼痛机制的R01和R21和 随后的R01，以开发、试点和评估复杂的干预措施，以减轻HS的疼痛和痛苦。

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.