ASH 2022 Data Support Peer-Mediated Pain Management Groups for Patients with Sickle Cell Disease

Investigators identified contributors to the pain experienced by patients with sickle cell disease (SCD). The findings from the IMPORT study were shared at the American Society of Hematology (ASH) Annual Meeting and Exposition.

The presentation given by Stephanie Guarino, MD, MSHP, of Nemours Dupont Hospital For Children, Center for Special Health Care Needs/Institute on Research in Equity and Community Health, Christiana Care, informed on the novel analysis of self-efficacy and experiences of stigma in adults with SCD and the significant association discovered between sigma and self-efficacy.

"Even a few years ago, I never expected to be in this area of research, but when you take care of patients with sickle cell disease, chronic pain is something that you deal with on a daily basis," Guarino shared in an interview with HCPLive. "And I think what we hear from our patients is that they don't want to take more medicines to deal with chronic pain, they want other ways to be able to function better, to be part of their family, to go to work, to go to school."

She implemented a patient-centered approach when starting on this research years ago. By gaining a thorough understanding of what her patients were already doing to manage their pain, what worked, what didn't work, what did they more education on, Guarino learned that most patients wanted nonpharmacologic pain management practices.

"They were interested in a group intervention to help learn to manage sickle cell," she explained, "because I may be a medical expert on sickle cell, but I don't know what it's like to live with sickle cell disease. So, what we plan to do with these findings from IMPORT, is to implement a peer-mediated group curriculum that's sickle cell disease-specific to try to address some of these experiences of stigma and discrimination, and help improve self efficacy."