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The self-management and transition to AdulthoodProgram “UNC STARx”: Instruments and lessons from the field (pp. 137-147) $45.00
Authors:  Maria E Ferris, Michael T Ferris, Carolyn Viall, Heather D Stewart, Nicole Fenton, Cara Haberman, Edward A Iglesia, Lauren E Hancock, Dona H Harward, Donna Gilleskie, James O’Neill, Robert Imperial, Zion Ko, Mary H Benton, May Doan, Kristi Bickford, Randy Detwiler, Kenneth Andreoni, John D Mahan, Zachary Smith, and Keisha Gibson
Abstract:
The University of North Carolina’s Self-management and Transition to Adulthood with Rx=therapies Program (UNC STARx) has gained experience since 2006. This manuscript describes the program’s evolution from a nephrology-centric intervention to addressing multiple-conditions in an institution-wide interdisciplinary program. We illustrate the lessons and insight informed by youth with chronic conditions/disabilities, parent, health provider and community partner perspectives across the continuum of health care transition (HCT). Specifically, lessons relate to program sustainability, including the importance of a dedicated program coordinator, inter and intra-institutional collaboration to validate tools that promote and assess patient self-management skills and HCT, strategies to improve youth, provider (pediatric and adult-focused) and parent communication, and the important role for peer volunteers (in person or through social media) are addressed. The UNC STARx Program’s collaboration has produced IRB-approved tools that promote communication between youth with chronic conditions and providers, while outlining customized interventions based on patient’s level of knowledge and skill mastery. Two private foundations provided initial funding and it now has become an institution-wide collaborative funded primarily by the North Carolina Children’s Hospital. The UNC STARx partners include youth with chronic conditions and disabilities, families and researchers from several disciplines and institutions in our state, nation and the world. Our innovative program holds great promise and it already appears to improve health outcomes and quality of life for youth and their families (based on participation rate and user satisfaction both at >95%). Our lessons from the field may assist other institutions as they strive to improve adolescents’/young adults’ health outcomes through evidence-based and cost-effective interventions. 


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The self-management and transition to AdulthoodProgram “UNC STARx”: Instruments and lessons from the field (pp. 137-147)