Baltimore, MD (September 19, 2023) — Sickle cell disease hurts, and the debilitating pain can send children to the hospital multiple times a year. A medication called hydroxyurea reduces episodes of pain and hospitalization—but studies suggest medication adherence rates among children are as low as 20% to 50%. Today, Scene Health and the Research Institute at Nationwide Children's Hospital announced a $1.9 million effort to help children and teenagers living with sickle cell disease (SCD) improve their health and quality of life through increased adherence to hydroxyurea treatment.
The Small Business Innovation Research (SBIR) grant from the National Heart, Lung, and Blood Institute will fund the ADHERE (Applying Directly observed therapy to HydroxyurEa to Realize Effectiveness) study. Video DOT is a method of monitoring, encouraging, and measuring medication adherence through videos recorded and exchanged between patients and caregivers via Scene's asynchronous video technology platform. The ADHERE study will be a randomized trial to determine if youth and caregivers remain engaged with Scene’s video DOT platform and results will inform future trials to determine if this intervention can translate hydroxyurea’s effectiveness from clinical trials into practical, real-world settings.
SCD is one of the most common inherited blood disorders in the U.S., and it disproportionately affects Black people, occurring in 1 in every 365 Black births. The condition burdens communities with limited access to healthcare resources and information, exacerbating the severity of this condition among vulnerable populations.
Hydroxyurea is the primary therapy to reduce acute complications and vaso-occlusive crisis pain, improve health-related quality of life, and prevent long-term organ damage. However, despite increased hydroxyurea usage among young patients, emergency department visits and hospitalizations remain high due to medication nonadherence. Hydroxyurea nonadherence exacerbates poor outcomes and magnifies the staggering cost of care for SCD. In one study, those who were highly adherent to hydroxyurea had annual SCD-related health costs of about $12,500 compared to nearly $22,000 for poorly adherent patients.
“This project builds on the work we’re doing at Nationwide to improve the lives of children and teens living with sickle cell disease," said the study’s principal investigator, Dr. Susan Creary, a pediatric hematologist at Nationwide Children's Hospital. "By increasing hydroxyurea adherence, we hope we can keep children with sickle cell disease out of the hospital, improve their quality of life, and allow them to live their best life.”
The ADHERE study will recruit children and adolescents with SCD and their caregivers from three sites: Nationwide Children's Hospital, Rhode Island Hospital’s Hasbro Children’s Hospital, and Anne & Robert H. Lurie Children's Hospital of Chicago. Half of these individuals will be randomized to receive Scene's video DOT technology, experience Scene's MedEngagement program, and receive personalized monthly telephone calls and messaging from Scene's care team.
"SCD is a devastating and painful condition that can lead to a lifetime of hospitalizations and early death. Medication non-adherence to treatments for SCD is a major problem, and we are excited to partner with Dr. Creary, an expert in pediatric SCD and adherence,” said Sebastian Seiguer, CEO of Scene Health. “Dr. Creary pioneered the use of video DOT for supporting adherence to hydroxyurea in children and teens, validating the effectiveness of the ‘gold standard’ for adherence in SCD care. Our partnership will lead to a robust program that optimizes and sustains adherence, giving children and young adults a chance to combat the ‘sickling’ of their cells so that they can live longer and with less pain.”
The project builds on two studies led by Dr. Creary demonstrating video DOT's feasibility and acceptability, and preliminary efficacy in improving hydroxyurea adherence in children with SCD. With Scene's collaboration, the ADHERE study is poised to optimize video DOT's ability to promote lasting adherence.
About Scene Health (formerly emocha Mobile Health)
Scene Health's 360° model of care enhances Directly Observed Therapy through video technology to address the $500B medication nonadherence problem. Scene currently delivers programs for Medicaid and Medicare MCOs, public health departments, and life science organizations covering multiple chronic and infectious conditions, including diabetes, asthma, cholesterol, opioid use disorder, hepatitis C, tuberculosis, hypertension, and solid organ transplants.
About Nationwide Children's Hospital
Named to the Top 10 Honor Roll in the U.S. News & World Report's 2023-24 list of "Best Children's Hospitals," Nationwide Children's Hospital is one of America's largest not-for-profit, free-standing pediatric health care systems providing unique expertise in pediatric population health, behavioral health, genomics, and health equity as the next frontiers in pediatric medicine, leading to best outcomes for the health of the whole child. Integrated clinical and research programs, as well as prioritizing quality and safety, are part of what allows Nationwide Children's to advance its unique model of care. Nationwide Children's has a staff of more than 14,000 that provides state-of-the-art wellness, preventive and rehabilitative care, and diagnostic treatment during more than 1.7 million patient visits annually. As home to the Department of Pediatrics of The Ohio State University College of Medicine, Nationwide Children's physicians train the next generation of pediatricians and pediatric specialists. The Abigail Wexner Research Institute at Nationwide Children's Hospital is one of the Top 10 National Institutes of Health-funded free-standing pediatric research facilities. More information is available at nationwidechildrens.org.
National Institutes of Health Statement
Research reported in this publication was supported by the National Heart, Lung, And Blood Institute of the National Institutes of Health under Award Number R44HL169085. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.
The Bliss Group