Telehematology: Expanding Comprehensive Care for Pediatric Patients with Blood Disorders through Telemedicine at Several Delivery Sites (Medical Homes, Hospital Clinics, Home Setting and Hemophilia Treatment Centers (HTC)) and with Interdisciplinary Providers

Background: Telemedicine (TM) is the exchange of medical information from one site to another via electronic communications to improve patients' health status and access to care. We used telemedicine to provide comprehensive hematology services to patients with blood disorders at a variety of sites that included medical homes, hospital specialty clinics, HTC, patients home and teleconsultation with out of state HTC, all located at a distance from the Michigan State University Center for Bleeding and Clotting Disorders (MSU CBCD). The goals were to increase access to family centered and culturally competent specialty care and increase the numbers of patients with blood/bleeding/clotting disorder that were timely and accurately diagnosed, managed and referred for specialty care.

Objectives: 1) To understand the feasibility of telemedicine between specialists and a variety of remote sites for children with bleeding/blood disorders 2) To assess the acceptability by patients, families, primary care physicians, remote site staff, specialist physicians, and specialist staff and 3) To assess the cost of telemedicine visits versus traditional visits from the societal perspective 4) To provide education and resources to distant providers.

Methods: Telemedicine sites were 1) two medical homes-one at a pediatrician's office, Upper Great Lakes Family Health Center (UGLFHC)/Portage Health in Houghton MI and the other at a family medicine office, Iron Mountain/Iron River Upper Peninsula, MI 2) specialty clinics at Marquette General Hospital, Marquette MI 3) Hemophilia Treatment Centers (HTC) at Traverse City MI and Rush University IL 4) and a patient's home in MI. Polycom^TM and/or Vidyo^TM systems were used to deliver HIPAA (Health Insurance Portability and Accountability Act) regulated bidirectional videoconferencing technology. Records of patient visits seen by local providers and via TM by MSU CBCD pediatric hematologists, nurse and social worker were obtained. Data included patient diagnosis, distance traveled, estimated time and travel costs saved, and education of distance provider. Measurable objectives included feasibility, acceptability. Technology issues were addressed. Site visits with Portage and Iron River Health Department were conducted to discuss local barriers and needs.

Results: Beginning 1998, a total of 68 patients, ages 2 weeks to 17 years and their families were seen by TM at various sites. There were 97 TM visits and frequency of clinics varied monthly to as needed. Average distance travelled by patients to local clinics ranged from 12 - 70 miles (range 2-170 miles). In addition to coagulation disorders (hemophilia, von Willebrands disease, factor deficiencies, patients with bleeding symptoms such as epistaxis, menorrhagia etc.), other diagnosis such as cytopenias, spherocytosis, hemoglobinopathies, lymphadenopathy, Hereditary Hemorrhagic Telangiectasia, Ehlers Danlos Syndrome, and pediatric oncology patients in follow-up phase were also seen and in some cases family members tested. Physician and staff were educated regarding disease management; guidelines and educational materials shared. Estimated costs per patients to fly or drive to MSUCBCD were $999 ($579 -$1275) and $1653 ($1405-1887) respectively compared to obtaining care locally $87.6 ($73-117) via TM. This resulted in cost savings per patient of $911.4 and $1565.7 for driving and flying respectively. The MSU CBCD team also incurred significant cost savings by avoiding travel/lodging costs. Interviews with staff and physicians resulted in improvement in TM acceptance and delivery. A majority of laboratory testing were send-outs and local testing for platelet function defects were not available. Technology issues addressed included adjustments in bandwidth, firewall and network settings. It was feasible to do consultations with out-of-state HTCs as well as follow patients at home.

Conclusion: Besides improving access to specialty care, TM with remote areas is feasible and acceptable in a variety of settings with considerable time and cost savings for both patients as well as the specialty care treatment team. Our study is in accordance with the American Academy of Pediatrics recent policy statement (Pediatrics 2015;136:202-209) recommending that TM services be coordinated through the medical homes thereby involving local primary care providers.