source: American Society of Pediatric Hematology/Oncology

year: 2016

authors: Kunal Sanghavi, Margaret Holtz, Kathleen Dempsey, Beth Vogel, Michele Caggana, Joann Bodurtha, Debra Cohen

Patients with sickle cell disease (SCD) who live at long distances from their specialty care center can have difficulty with clinic visit compliance. The Children’s Hospital of Pittsburgh (CHP) and the New York Mid-Atlantic Consortium for Genetics and Newborn Screening Services (NYMAC), a federally funded regional collaborative, recognized the need for families and providers to improve access to clinical services for these patients.

Objectives: To continue to provide service utilizing telemedicine for pediatric patients with SCD. To host onsite telemedicine training to illustrate how Telehealth can improve accessibility to care, increase workforce capacity, and identify barriers to its implementation at CHP for pediatric hematologists in the NYMAC region (DC, DE, MD, NJ, NY, PA, VA, and WV).

Design/Method: Telemedicine infrastructure was established in a satellite clinic at both Erie and Johnstown in Western Pennsylvania for monthly telemedicine sessions. CHP Staff and CHP SCD providers completed the telemedicine training. Patient satisfaction surveys were administered following the telemedicine visit. Pediatric hematologists in the NYMAC region were invited to participate in an onsite training program at CHP.

Results: Nine pediatric patients were seen at the Erie clinic which yielded 73 completed telemedicine visits. Two pediatric patients were seen at the Johnstown clinic, yielding 7 completed telemedicine visits. Improvements with clinic access, hydroxyurea adherence, and patient satisfaction were noted as positive results of Telemedicine. The pilot at CHP in 2013 resulted in an increased proportion of patients receiving four annual clinic visits to 90%, as well as access to genetic counseling for SCD families. The proportion of patients receiving hydroxyurea increased to 50%. SCD telemedicine services saved patients/families crucial time and resources.

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