Aims: The National Diabetes Services Scheme (NDSS)1 implemented the Youth Transition Pack (YTP) in 2010 to engage, inform and support young people with diabetes, and their parents, through the transition from paediatric to adult care. The YTP comprises an annual birthday card sent to NDSS registrants (aged 12-20 years), and a letter to parents providing age-relevant information. Our aim was to evaluate the value of the YTP. This evaluation is part of the NDSS National Development Program for Young People with Diabetes.
Methods: Postal invitations to complete the online survey were sent to 4,000 parents/registrants aged 12-18 years) and 1,602 registrants aged 19-20 years. Questions focused on recall, attitudes to the YTP, follow-up behaviours, and transition preparedness.
Results: Feedback was received from 1,161 respondents (439 parents and 622 youth). The letter/card was recalled by 85% parents (89% youth), of whom 98% parents (97% youth) read it; 89% parents considered content relevant, 61% indicated it provided new information, and 77% felt supported by NDSS; 73% youth ‘liked’/‘loved’ the card, increasing to 93% for 12-year-olds. Receipt of the YTP prompted 71% parents to talk to their child about transition and self-management, and 57% sought additional diabetes information. Fewer parents (33% overall) were prompted to discuss transition with healthcare professionals (increasing to 57% for parents of 17-year-olds). Forty percent of youth thought their paediatric team could do more to help prepare for transition (e.g. meeting the new doctor beforehand, help choosing adult providers, understanding how paediatric and adult clinics differ).
Conclusion: The YTP appears successful in reaching and engaging parents and young people, and provides an effective channel for NDSS communications. These findings highlight opportunities for enhancing future YTP content to increase impact and support for a smooth transition.
1. The NDSS is an initiative of the Australian Government administered by Diabetes Australia.