Despite recent advances, management of pediatric T1D remains extremely challenging, in part due to psychological distress and poor adherence to recommendations. The HFWP aims to adapt and test an innovative strategy, used in behavioral health, to improve self-management and self-efficacy in high-risk youth with T1D. Stakeholder engagement, with the integration of patient, family and community/system partners into the research team, is increasingly recognized as a critical component of patient-centered research. We describe the process and outcomes of stakeholder engagement to inform T1D HFWP research activities and resources. A total of 21 stakeholders, representing family, youth and community/systems partners (e.g., ADA, JDRF, Health Plan), were selected through a rigorous application process and participated in monthly meetings for 13 months. Measures of satisfaction with processes and experience were obtained via an anonymous survey completed after every meeting. On average, 70% consistently answered the survey over 13 months. Stakeholders strongly agreed that the meetings met their expectations (4.75/5), objectives were identified and followed (4.5/5), their voices were heard (4.64/5) and the Advisory Board was effectively molding the T1D HFWP (4.75/5). The majority (~70%) were satisfied with meeting frequency and duration. The Advisory Board proposed important outcome measures which were adopted, including evaluation of anxiety and distress in youth and caregivers. Concrete areas of need were identified, leading to systematic development of tools, including a guide for families to vet online T1D resources and design of a practical, patient-centered form outlining a medical summary for families (e.g., insurance, type of devices used, phone numbers, etc.). This experience illustrates the willingness and importance of partnering with stakeholders to help shape resources and programs in pediatric T1D intervention research.
A. G. Nevin: None. C. March: None. L. Jones: None. J. Schreiber: None. I. Libman: Advisory Panel; Self; Novo Nordisk.
Children’s Hospital of Pittsburgh Foundation