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Rhode Island Foundation Awards $61,000 to Pediatric Heart Center
In July, the Rhode Island Foundation awarded the Pediatric (Pedi) Heart Center at Hasbro Children’s Hospital a $61,000 grant to implement a pilot program for adolescents with congenital heart disease (CHD). The program will assist patients and their families in transitioning from pediatric to adult care. Hasbro Children’s Hospital is Rhode Island’s only medical facility dedicated to pediatric care and is the largest children’s hospital between Boston and New York City. Ninety-five percent of Rhode Island’s pediatric cardiac patients – more than 3,000 children – are treated at the Pediatric Heart Center.
In recent years, medical science has made huge strides in extending the lives of children with chronic illnesses like CHD. However, patients with CHD require lifelong cardiac care. As a result, the need for a program that gives young people the tools to move from pediatric to adult care has grown exponentially. Thanks to the Rhode Island Foundation grant, Hasbro Children’s Hospital’s Pediatric Heart Center Transition Program was established and strives to become the model for chronic illness care programs of the future.
The core component of the program is shared medical appointments (SMAs). The 90-minute SMAs are held monthly for eligible patients between the ages of 12 and 23. Participants receive medical exams along with education and peer support. Concurrently, a parents group offers information on how to facilitate the child’s transition. An interdisciplinary team including a pediatric nurse practitioner, social worker, nurse, psychologist, and medical assistant provides evaluation and care before and after the SMA. At the end of the SMA, patients create a personal transition goal. Three months later, participants return for a follow up evaluation and meet with a social worker to review progress. After transferring to adult care at the Lifespan Cardiovascular Institute, a transition coordinator continues to guide adolescent patients with coaching, outreach, resources, and support.
At the completion of the pilot program, the Pedi Center will create a training manual for distribution and future use.