Pain in Hidradenitis Suppurativa: Phenotypes and Stakeholder Perspectives

项目总结/摘要 候选人：这个K23职业发展奖将准备劳伦奥伦斯坦，医学博士MS了解 化脓性汗腺炎（HS）的疼痛机制和轨迹，以开发和评估 有针对性的干预措施，减少疼痛和改善生活质量（QoL）的严重皮肤病。通过 在K23，她将追求三个职业发展目标：（1）发展专业知识， 和前瞻性研究的统计分析，（2）获得混合方法的技能，（3）获得实践 在利益攸关方参与的干预措施制定和评价研究方面的经验。 指导和环境：奥伦斯坦博士召集了一位国际知名的导师， 该小组具有互补的专门知识，在指导初级调查员方面有着出色的记录。 她的主要导师是：Rachel Patzer，PhD MPH（专长：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（专业知识： 混合方法，企业主参与的研究，设计和评估复杂的行为和 卫生系统干预措施）。她的共同导师是：Suephy Chen，MD MS（患者报告的结局 皮肤病），Amit Garg，医学博士（HS流行病学和结果指标）和丹尼尔哈珀，博士 (pain机制和定量感官测试）。顾问包括：John Ingram，MA MSc DM FRCP FAcadMedEd（HS中的疼痛测量），Kimberly Curseen，MD（姑息治疗），Anne-Marie McKenzie-Brown，MD（疼痛管理）和Dong Li MD，MD PhD（生物统计学）。担任助理 皮肤科教授，奥伦斯坦博士将有机会进入皮肤科中心的成果 研究和安全单位和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，导致复发，疼痛 疤痕性疼痛导致生活质量差。疼痛被HS患者评为他们最重要的症状，然而， 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。 具体目的：在一项前瞻性队列研究中，我们将确定HS疼痛机制，确定 疼痛干扰日常活动的疼痛机制，建立HS疼痛轨迹模式，并优化 用于临床试验的HS疼痛测量。在另一项研究中，我们将使用混合方法设计来了解 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。我们 我将把这些数据提交给一个由HS患者、社区倡导者和临床医生组成的利益相关者小组。 专家将使用干预映射技术来生成设计和 评估减轻HS疼痛的复杂干预措施。这项拟议中的研究将为奥伦斯坦博士提供 有了初步的数据和培训，申请R 01专注于HS疼痛机制和R21， 随后的R 01，开发，试点和评估复杂的干预措施，以减轻疼痛和痛苦的HS。

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.