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

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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.