UF nursing researcher receives $2.6 million grant to improve pain associated with sickle cell disease

Miriam EzenwaA University of Florida College of Nursing researcher will explore new techniques to reduce pain and manage stress among patients with sickle cell disease, thanks to a $2.6 million grant from the National Institute of Nursing Research.

Miriam O. Ezenwa, Ph.D., M.S.N., R.N., FAAN, an associate professor at the College of Nursing, is the principal investigator on the project, which aims to use self-management interventions like guided relaxation therapy to improve the lives of those with the disease.

Sickle cell disease is a rare, painful blood disorder that mainly occurs in the Black population. Opioids, which have dangerous side effects, are currently the primary therapy used to help mitigate pain in sickle cell disease patients. Ezenwa said there are various stigmas associated with this patient population because they are a disparate group suffering from both acute and persistent pain, and opioid use only magnifies these stigmas.

“Historical and contemporary prejudices and stereotypes are associated with those who suffer from sickle cell disease because of their racial background,” she said. “Stress from sickle cell disease symptoms and social factors have been magnified by the public health crisis related to the opioid overdose epidemic in the United States.”

Ezenwa and her research team aim to create an intervention that allows sickle cell disease patients to use a balanced approach to pain management. The project, called “You Cope, We Support,” provides patient-centered guided relaxation/distraction exercises that help reduce stress and, thus, pain. Stress releases certain hormones, like cortisol, norepinephrine and epinephrine, which trigger a fight-or-flight reaction and intensify pain response.

Relaxation exercise evokes positive hormones, like endorphins, that reduce inflammation and pain. In this study, guided relaxation comes in the form of video clips with a soothing voice that instructs the viewer to observe the cloud-like formations on the screen and concentrate on breathing techniques. Controlled breathing sends direct messages to the brain, which then sends messages to the body and helps control pain levels. The technique has been used by Inge Corless, Ph.D., R.N., FNAP, FAAN — a member of the MGH Institute of Health Professions and a consultant on the project — in psychoneuroimmunology studies in patients with cancer or HIV.

Building on previous pilot studies, the “You Cope, We Support” project will be conducted with patients from the UF Health Shands Hospital pediatric and adult sickle cell programs. Patient-centered guided relaxation/distraction exercises have been specifically modified for this project.

In addition, because patients were found to be more likely to engage when they are supported, automated system-generated alerts/reminders will be sent every 24 hours via phone call, text or email, and a designated health care worker from the community will serve as the proactive remote support staff.

using mobile phone

Ezenwa said the ultimate goal is to have guided relaxation techniques become an accepted prescription by health care providers for sickle cell disease patients worldwide.

“I believe in a balanced approach to care,” she said. “There is a place for both drug and non-drug therapies in pain management, and there is also a place for patients to become active partners in their own care. It is our hope that the “You Cope, We Support’’ intervention will help patients relax and heal without the need to take large amounts of opioids.”

Anna McDaniel, Ph.D., R.N., FAAN, dean of the College of Nursing and the Linda Harman Aiken Professor, said this research could not have come at a better time.

“The recent racial and social movements within our country put a clear focus on the populations who have suffered from health disparities for so long,” McDaniel said. “At the UF College of Nursing, we are proud of the work we are doing to move racial and social justice forward. Dr. Ezenwa’s research on pain management for sickle cell disease patients is a significant step toward creating balance and equality in health care.”

Co-investigators on the grant, titled “A Stress and Pain Self-management m-Health App for Adult Outpatients with Sickle Cell Disease,” make up a multidisciplinary team from the College of Nursing, including Diana Wilkie, Ph.D., R.N., FAAN; Yingwei Yao, Ph.D.; and Robert Lucero, Ph.D., M.P.H., R.N., FAAN; the UF College of Medicine, including Lucien Black, M.D., and Molly Mandernach, M.D., M.P.H.; and the UF College of Public Health and Health Professors, including David Fedele, Ph.D., ABPP.

Research reported in this publication was supported by the National Institute of Nursing Research of the National Institutes of Health under Award Number R01NR018848. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.