Riley Children’s Health is currently enrolling patients in the nation’s only National Institutes of Health (NIH)-funded telemedicine study for sickle cell disease (SCD). Evaluating specific models of telemedicine, the study aims to expand access to subspecialty sickle cell care.
"We know that access to care is a huge challenge because there aren’t enough sickle cell specialists in the country,” said Seethal A. Jacob, MD, MS, FAAP, director of the Sickle Cell Program at Riley Children’s and the study’s principal investigator. “Our research shows that in addition to families seeing two or more healthcare providers for their child with sickle cell, they have six or more barriers to accessing specialized care, and one of them is often distance from home."
The five-year, NIH-funded study is evaluating two models of telemedicine: traditional hub and spoke and direct-to-consumer. In the hub and spoke model, which Riley Children’s has offered from time to time over the years, the quaternary pediatric hospital with the SCD specialist on-site serves as the hub. The patient and family are present at a clinic near their home (the spoke) with a healthcare provider who performs the necessary physical exam. In this model, the patient and SCD specialist interact through video visit. The second model, direct-to-consumer, also uses video visit; however, this method includes a remote examination device so that the telemedicine visit can occur with the patient in their home.
"We developed both of these models with input from our patients and families,” Dr. Jacob explained. “And while many families love the convenience of telemedicine at home, they said that not having the exam component felt like they were missing an essential piece."
Sickle cell patients enrolled in the direct-to consumer arm of the study are using a commercial physical examination device that connects to a mobile app. The app uses the camera on a smartphone, tablet or laptop to allow the specialist to see the patient, while the child’s caregiver operates the device to conduct the child’s physical exam.
"While there’s a learning curve in using the device, being able to do an exam virtually is a phenomenal benefit for families who are eager for a telemedicine option to reduce the challenges of caring for a child with a chronic disease,” Dr. Jacob said. “Parents have seen us do these exams many times. They want to get it right, and it’s amazing through our study to see just how well they’re doing with it."
The study is designed to gather data and learnings on how well families are able to keep up with SCD standards of care with the telemedicine model they are using. The research will also determine if there are any factors that would make either model better or more acceptable to particular patients with SCD.
Sickle Cell Program at Riley Children's
Treating nearly 400 patients from age 0 to 22, the comprehensive Sickle Cell Program at Riley Children’s provides a multidisciplinary clinic with co-location of subspecialists in hematology, pulmonology, neurology and adolescent medicine to provide coordinated care for the medical complications that coincide with sickle cell disease. Social workers, educational liaisons, psychologists and other professionals with expertise in sickle cell contribute to complete patient care.
Other features of the program include:
- Indiana’s only stem cell transplant center for non-malignant transplants.
- Lifespan Sickle Cell Disease Center of Excellence, a partnership between Riley Children’s and Indiana University Health, provides lifelong sickle cell care, reducing disruptions and barriers to care in high-risk periods.
- State-funded Transition Program with a designated nurse coordinator supports adolescent patients in preparing for a smooth transition to adult care.