TARGET PROJECT 3
Chronic Pain and Self-Efficacy: A Peer Mediated Group Intervention for Adults with Sickle Cell Disease
Project Lead: Stephanie Guarino, M.D.
Dr. Guarino completed her Doctor of Medicine degree at Baylor College of Medicine with a certificate in the Care of the Underserved. She moved to Delaware for residency and completed an Internal Medicine/Pediatrics residency at the Jefferson Medical College/ChristianaCare Health System and a fellowship in Pediatric Hematology/Oncology at Nemours/AI duPont Hospital for Children. She also obtained a Master of Science in Health Policy from Jefferson College of Population Health.
Currently, Dr. Guarino is a pediatric hematologist/oncologist at Nemours, focusing on building an Adolescent/Young Adult (AYA) Oncology program for the state. She is the Medical Director of the Sickle Cell Program at the Center for Special Health Care Needs at ChristianaCare, which provides a medical home to adults patients with sickle cell disease. As a physician scientist in the Institute for Research in Equity and Community Health, her research focuses on the experiences of chronic pain, stigma, and racism in sickle cell disease and the health care disparities in AYA oncology. In her free time, she enjoys running, puzzles, reading, and cooking.
Project Summary:
Sickle cell disease is the most common inherited hemoglobinopathy and causes a variety of complications over the lifespan, including chronic pain, which can be quite debilitating. The most common pharmacologic modality currently available to manage pain is chronic opioid therapy, but this is problematic and has not been shown to be particularly efficacious. In management of general chronic pain, there is growing focus on nonpharmacologic modalities, including peer-mediated self-management interventions. For example, ChristianaCare currently offers a chronic pain group curriculum facilitated by a psychiatrist. A sickle cell disease specific peer mediated intervention is hypothesized to improve chronic pain and health related quality of life as well as decrease health care utilization. This project will engage patients with sickle cell disease to demonstrate feasibility of training peer leaders to deliver a sickle cell specific group intervention which has been developed in our previous research. Furthermore, sickle cell disease exclusively affects minority patients and the resulting chronic pain must be explored in the context of racism, biases, stigma, and distrust in the medical system. These relationships have not yet adequately been explored; thus, this project will explore these psychosocial experiences and their effect on the experience of chronic pain. We will then evaluate the adapted curriculum in a focus group setting while training peer leaders to facilitate group sessions. Completing this work will produce a community informed curriculum and trained peer leaders that can then be evaluated in further study. It will also expand our understanding of how experiences of racism, stigma, and racial identity contribute to chronic pain and poor self-efficacy at managing SCD in adult patients with the disease.
Publications:
https://www.ncbi.nlm.nih.gov/myncbi/1dqLl9ko9NXsRn/bibliography/public/