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CASE STUDY

Isabella was born prematurely, with congenital heart disease and hypoplastic lungs. She underwent several surgeries, including a tracheostomy and feeding tube placement. After many months in the hospital she was able to be discharged home on a home ventilator. Her care team includes a pulmonologist, cardiologist, gastroenterologist, and the complex care team. In the year since her discharge, she has done well and now only requires a ventilator at night. During that year, however, she developed respiratory viral infections. Each illness required a trip to the local hospital, a long wait, and an exam by an unfamiliar provider who then transferred her by ambulance to the more distant children's hospital where her care team was located. Twice she was able to be sent home, and three times she was admitted to the intensive care unit for a longer hospital stay. Her mother was frustrated with the time and expense of these visits. She wanted to be able to keep her at home, but agreed that the team needed to be able to see Isabella frequently during her illness in order to adjust her support. A new telemedicine program was implemented, and Isabella's mother was given a tablet computer and a handheld device that allowed her to connect to the complex care team. When Isabella developed a slight fever and increased respiratory secretions, her mother called the care team. Her physician was able to connect by video and guide the mother through a physical exam with a stethoscope and skin camera. Isabella was placed on her home ventilator for 4 days. Her physician and respiratory therapist connected with her every day to check in and repeat her exam. Isabella was able to remain at home, and her mother was very relieved to have the support of a team that knew her well.

BACKGROUND

The accompanying chapters explore the many uses of telemedicine to serve the pediatric population in any setting: inpatient, emergency departments, schools, child care, and outpatient clinics. These programs have succeeded in meeting the goals of increasing access to care, improving quality, reducing costs, and meeting the technology demands of patients and providers. Within this patient population, there exists a subset of children who require far more than the care needed by an average healthy child, or even one with an acute illness. Children with special health care needs (CSHCN) are recognized by the Maternal Child Health Bureau as those who require more care and resources on a chronic basis. Studies to quantify this need have stated that these children represent between 0.5% and 16% of the U.S. population, but require an estimated 10% to 50% of all health care dollars. 15 These children may have chronic physical needs such as diabetes, asthma, or congenital heart disease or perhaps developmental and/or behavioral issues that increase their need for care. There is overall a greater need for specialty care. 6

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