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Sickle Cell Program Receives $50,000 Grant to Support Vital Transition Programs

Monday, December 15, 2014

The sickle cell program at Children's Hospital of Richmond at VCU (CHoR) has been awarded a $50,000 grant from the Shelton Short Foundation to support educational and vocational resources for patients with sickle cell who are transitioning to adult care.

Sickle cell is a lifelong chronic illness with progressive symptoms and organ dysfunction. Patients are cared for in the pediatric sickle cell clinic until high school graduation when medical care moves to the adult clinic. The time immediately following transition is high risk, medically and psychosocially. Mortality is high, and is highest for those patients who are not receiving regular specialty care.

The grant funding will be used to augment CHoR's existing sickle cell transition program, which serves to ready high school aged patients to transition to medical care with an adult sickle cell provider. In addition to helping patients with a successful medical transition, the funding will help facilitate a successful psychosocial transition to plan for vocational/educational success after high school graduation.

Historically, fewer than 50 percent of sickle cell patients made a successful transition and continued to get specialty care that could be lifesaving.

"Our program serves to empower patients for a successful transition," said India Sisler, MD, interim chief of the hematology and oncology at CHoR. "We prepare teens to participate in their medical care by educating them about health literacy, insurance benefits, etc. We also work with patients to develop educational and vocational goals and to implement a plan to achieve those goals."

The grant will enable Dr. Sisler and her sickle cell team to:

  • Engage every high school aged patient in the transition program. Including a formal transition curriculum that includes medical and psychosocial information.
  • Offer two overnight retreats for high school aged patients.
  • Increase the availability of psychosocial support for patients in high school and in the first two to four years following transition to the adult clinic. These services will include (but are not limited to) vocational assessments and planning, educational assessments, working with patients to navigate the office of disabilities, helping patients navigate social security and disability, and helping patients to obtain health care coverage. This will all serve to eliminate barriers to patients getting life-long, effective specialty care.

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