Evidence-based Approaches to Chronic Pain Management in Youth with Sickle Cell Disease

项目摘要 慢性疼痛是一个复杂而具有挑战性的问题，与严重残疾和痛苦有关， 儿童和青少年患有镰状细胞病（SCD）。在科学知识方面存在着差距， 了解慢性SCD疼痛的进展，这阻碍了有效治疗方法的发展， 选项.心理治疗是综合慢性疼痛管理的关键组成部分， 目前对控制青少年SCD疼痛的疗效有限。因此，这一长期职业目标 候选人将成为一名独立的临床研究者，具有SCD疼痛方面的专业知识， 为SCD疼痛管理提供行为干预的阶梯式护理模式， 在现实世界的临床环境中实施。她将开始通过获得临床和 SCD疼痛生理学和药理学的研究培训以及实施科学，健康 差异研究，以及先进的定量和定性方法，以支持以患者为中心的 疼痛干预开发、优化和评估的方法。她的职业发展计划是 独特的定制，以满足她在国家和国际的指导下，在儿科疼痛培训的差距 埃默里大学和亚特兰大儿童保健中心的领导人。培训计划充分利用了- 支持美国最大的儿科镰状细胞项目的基础设施，以及国家和 机构的机会，以确保教学，经验和专业的个人指导。研究 本申请的目的是首先严格表征24个月内慢性疼痛的轨迹 SCD青少年队列（年龄10-18岁）。数据将有助于确定可改变的心理社会和 家庭风险因素（例如，升高的焦虑或抑郁症状，照顾者压力），预测不同的 慢性疼痛轨迹，以告知相关的行为治疗目标，在一个以家庭为中心的认知行为 干预标准的定性和混合方法的方法和迭代设计使用焦点小组，关键 知情人访谈和社区利益相关者将用于制定和完善干预内容， 格式和征求反馈，以提高未来在临床环境中实施的成功。结果将 是一个以家庭为中心的，文化上知情的，以证据为基础的干预措施，称为Back 2Living（“建立适应性 应对和知识，以改善日常生活”），这是适合在现实世界的临床实施 设置.一项初步概念验证试验将评估以下方面的可行性、可接受性和初步疗效： Back 2与患有慢性SCD疼痛的青少年及其父母一起生活。适应性治疗方法，4-8 根据基线评估选择的治疗疗程将针对共病的心理社会风险因素 并允许灵活调整治疗成分，以满足个人家庭的需求，以减少疼痛 干扰、疼痛和医疗保健使用。这一提议的结果可能最终有助于创新 综合治疗方法，以治疗儿童SCD的慢性疼痛并改善生活质量。

PROJECT SUMMARY Chronic pain is a complex and challenging problem associated with significant disability and suffering among children and adolescents with sickle cell disease (SCD). There is a gap in scientific knowledge in understanding the progression of chronic SCD pain that hinders the development of effective therapeutic options. Psychological treatments are key components of comprehensive chronic pain management, but currently have limited efficacy for managing SCD pain in youth. Thus, the long-term career goal of this candidate is to become an independent clinical investigator with expertise in SCD pain to establish a novel stepped care model of delivering behavioral interventions for SCD pain management that are easily implemented in real-world clinical settings. She will begin to achieve these goals by obtaining clinical and research training in SCD pain physiology and pharmacology and training in implementation science, health disparities research, and advanced quantitative and qualitative methods to support a patient-centered approach to pain intervention development, optimization, and evaluation. Her career development plan is uniquely tailored to fulfill gaps in her training in pediatric pain under the mentorship of national and international leaders at Emory University and Children’s Healthcare of Atlanta. The training plan leverages the well- supported infrastructure of the largest pediatric sickle cell program in the US as well as national and institutional opportunities to ensure didactic, experiential, and specialized individual instruction. The research objectives of this application are to first rigorously characterize trajectories of chronic pain over a 24-month period in a cohort of youth with SCD (ages 10-18 years). Data will help identify modifiable psychosocial and family risk factors (e.g., elevated anxiety or depressive symptoms, caregiver stress) that predict different chronic pain trajectories to inform relevant behavioral treatment targets in a family-focused cognitive-behavioral intervention. Standard qualitative and mixed-method approaches and iterative design using focus groups, key informant interviews, and community stakeholders will be used to develop and refine intervention content and format and solicit feedback to enhance the success of future implementation in clinical settings. The result will be a family-focused, culturally informed, evidence-based intervention termed Back2Living (“Building Adaptive Coping and Knowledge To improve daily Living”) that is amenable for implementation in real-world clinical settings. A pilot proof-of-concept trial will evaluate the feasibility, acceptability, and preliminary efficacy of Back2Living with youth with chronic SCD pain and their parents. An adaptive treatment approach with 4-8 treatment sessions selected on the basis of baseline assessment will target comorbid psychosocial risk factors and allow flexibility in tailoring treatment components to meet individual family needs to reduce pain interference, pain, and healthcare use. Results of this proposal may ultimately contribute to novel comprehensive treatment approaches to treat chronic pain in pediatric SCD and improve quality of life.