Moving from pediatric (children’s) care to adult care can be one of the hardest changes you will face as a patient with sickle cell disease. Many issues must be considered when moving from a pediatric hematologist (sickle cell doctor) to an adult hematologist. There are many differences between pediatric and adult healthcare.
Parental involvement is expected and encouraged in pediatric healthcare. However, teens must be autonomous in adult healthcare models. St. Jude facilitates transition by providing education and skills to patients and parents from infant/toddler through teen clinic.
Data shows that young adult patients have an increased risk of death coinciding with transition care. Patients who receive intense services as pediatric patients and then fail to connect with adult providers experience an abrupt halt to those services and to healthcare. For St Jude, patients transitioning to adult care received fewer transfusions and hydroxyurea, had higher healthcare costs, and suffered frequent SCD-related complications.
Pediatric patients often do not have the support needed from family and have to navigate complex healthcare systems on their own. They need specific skills training to become advocates for their own health care.
St. Jude provides skills training in a teaching lab environment that leverages real-world scenarios. Their skills training program was limited by how many skills instructors were available and only available for patients still at the hospital.
St. Jude needed a digital training solution that simulated real-world environments provided tailor skills training, and could be accessed from anywhere in the world.
Agency 39A research teams worked directly with physicians and patients at St. Jude, forming a better understanding of the problems and limitations with a skills-lab approach.
We determined that a Virtual Reality (VR) training experience would best simulate the real-world interactions that patients have to navigate. Our approach involved patients and physicians in the design of the experience and development of training content.
We created, designed, and built a collection of training scenarios to help adolescents and young adults (AYA patients) navigate appointment setting, insurance requirements, prescription fulfillment, follow-on care, and ongoing medicinal regimen adherence. We developed the application for the Oculus headset in the Unity environment, mimicking the environments patients will encounter for each of the scenarios
Agency 39A developed an oculus-based VR teaching app, The St. Jude Skills Lab, to reduce the likelihood of Sickle Cell complications in Adolescent and Young Adult patients. The VR Skills Lab further extended the reach of the St. Jude skills lab, providing greater access to more patients with a self-service experience while reducing the organizational burden of small-group, instructor-led sessions.
Our VR solution helps ensure a successful transfer from pediatric to adult care by preparing pediatric patients for the culture of adult medicine, promoting self-advocacy in obtaining support from schools and employers, and addressing issues of funding of health care services.
Clinical researchers are often limited by the technical capabilities of the health system in which they operate, slowing research and leading to costly and mismatched technology that doesn’t deliver. Researchers are often handed technologies and tools that don’t meet their needs, are difficult to use, and require lengthy onboarding processes. All of this is a distraction for the research at hand, and the patients these clinicians serve.
Mismatched tools are part of a larger challenge, ensuring meaningful participation from research participants, adherence to medicinal regimen and the adoption of new behaviors. The role of the clinical researcher is complex and navigates emotional, social, physical, and digital needs. In the case of our work with St. Jude, an adolescent patient population managing serious chronic disease with ineffective digital tools becomes a significant barrier to better health and valuable scientific research.
The medicine only works for those that take it; obvious but important. One of the most common barriers for patients managing chronic disease is inconsistent medicinal regimens and poor health education. Despite evidence of the effectiveness of Hydroxyurea Therapy to manage Sickle Cell Disease, adherence is low among patients,
Inconsistent adherence leads to a decline in health and undermines the patient’s belief that Hydroxyurea has a positive impact on their health and well-being – further reducing better outcomes. Poor adherence to a medication regimen turns an effective therapy into an ineffectual, lost opportunity in patients with SCD who often have less access to healthcare providers and comprehensive sickle cell programs at a critical time in their lives: adolescence.
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