II PILOT 1
Patient, Caregiver, and Healthcare Provider Perspectives on Barriers to Pharmacologic and Non-Pharmacologic Therapies for Pain in Sickle Cell Disease
Investigator: Katie Parisio, D.O.
Profile
Dr. Parisio is a pediatric attending physician for hematology & oncology, and hospice and palliative medicine at Nemours Children’s Health. She earned her Doctor of Osteopathic at the Rowan University School of Osteopathic Medicine. She completed her residency at Goryeb Children’s Hospital in Morristown, NJ where she served as Pediatric Chief Resident for the last two years of her residency. She also completed her fellowship in pediatric hematology & oncology at Nemours Children’s Health. She works in Wilmington, DE and specializes in hospice and palliative medicine and pediatric hematology & oncology.
Project Summary
The sickling deformity of red blood cells in sickle cell disease (SCD) results in multisystem sequelae, including severe, acute pain from vaso-occlusive crises (VOCs) and chronic pain from central sensitization. Pain is the main cause of poor quality of life and hospital admissions among patients with SCD. Hospitalizations related to VOCs result in healthcare costs of >$488,000,000/year in the United States. The mainstay of acute SCD pain management is opioid medications. While opioid therapy is an important component of treatment for acute SCD pain, it can be complicated by toxicities such as opioid-induced hyperalgesia. Opioid therapy is also laden with stigma surrounding tolerance, dependence, and addiction potential. Adjunctive, non-opioid therapies may decrease total opioid use and thereby decrease opioid-induced side effects. In contrast, chronic SCD pain is best managed with non-opioid therapies. A multimodal, multidisciplinary approach to pain management that promotes non-opioid therapies can improve the quality of care for patients with SCD by addressing biopsychosocial components of the pain experience. Per the American Society of Hematology (ASH) guidelines, non-pharmacologic therapies are recommended for sickle cell pain. Unfortunately, according to the US Department of Health and Human Services, non-opioid therapies are underutilized for a variety of chronic pain conditions, including SCD.
As evidence mounts supporting the benefits of non-opioid interventions for SCD pain, whether used alone or in conjunction with opioid therapy, there is a gap in understanding barriers to utilization of these therapies for SCD pain. Identification of barriers relevant to adolescents and young adults (AYAs) with SCD is particularly important considering their higher rates of acute and chronic SCD pain, increased morbidity, and poorer quality of life compared to their younger counterparts. Guided by the Consolidated Framework for Implementation Research (CFIR), this study will examine current usage of pharmacologic and non-pharmacologic therapies among AYAs with SCD receiving care at Nemours via review of the electronic medical record (EMR) and the Sickle Cell Knowledgebase (a customized data visualization platform developed at Nemours) and utilize qualitative interviews with patients, caregivers, and healthcare providers to assess barriers to the use of non-pharmacologic and pharmacologic therapies for SCD pain.
Publications
https://www.ncbi.nlm.nih.gov/myncbi/katie.parisio.1/bibliography/public/