Summary

Managing pediatric chronic diseases is complex, especially during the transition from child-centered to adult healthcare systems. This transition period is marked by higher symptom burden, morbidity and mortality, and poor medical adherence.1–4 While there is a clear struggle for adolescents, parents also often face challenges in understanding their changing role and how to support their children, causing anxiety and uncertainty, which can hinder its success.5 An effective transition requires a shift in responsibility from parent to adolescent, and families that struggle with this renegotiation tend to have poorer outcomes.6,7 Self-management and self-advocacy are crucial, yet parents often feel uncertain about how to promote independence while ensuring their child’s medical safety.8 Parents often lack guidance and support during this transition period. While some resources like websites and pamphlets exist, they are mostly integrated into healthcare practices, and there is limited research on their effectiveness. This underscores the need for proven, supportive resources for parents, as well as children.

McMaster researchers developed a transition toolkit for adolescents aged 14–18 and their parents. The toolkit was created with insight from experts and existing resources from other pediatric centers. The toolkit contains two parts: a “Parent Guide” and a “Transition Road Map.” The “Parent Guide” explains the transition process and how parents can support their children during this time. The “Transition Road Map” helps parents assist their adolescents in becoming ready for the transition. It identifies key areas for readiness: Self-Advocacy, Medication Management, Overall Health and Safety, Lifestyle and Behaviors, and Future Planning. Each area will have a checklist to help adolescents become independent.

References

1. Agarwal, S. et al. Transfer from paediatric to adult care for young adults with Type 2 diabetes: the SEARCH for Diabetes in Youth Study. Diabet. Med. 35, 504–512 (2018).
2. Margolis, R. et al. Transition from pediatric to adult care by young adults with chronic granulomatous disease: The patient’s viewpoint. J. Adolesc. Health 61, 716–721 (2017).
3. Sadun, R. E. & Schanberg, L. E. Transition and transfer of the patient with paediatric-onset lupus: a practical approach for paediatric and adult rheumatology practices. Lupus Sci. Med. 5, e000282 (2018).
4. Oen, K. et al. Disease course and outcome of juvenile rheumatoid arthritis in a multicenter cohort. J. Rheumatol. 29, 1989–1999 (2002).
5. Nguyen, T. et al. You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management: Self-management for youth with chronic health conditions. Child Care Health Dev. 42, 464–472 (2016).
6. Paine, C. W. et al. Barriers and facilitators to successful transition from pediatric to adult inflammatory bowel disease care from the perspectives of providers. Inflamm. Bowel Dis. 20, 2083–2091 (2014).
7. Clarizia, N. A. et al. Transition to adult health care for adolescents and young adults with congenital heart disease: perspectives of the patient, parent and health care provider. Can. J. Cardiol. 25, e317–22 (2009).
8. Gray, W. N. et al. Concerns, barriers, and recommendations to improve transition from pediatric to adult IBD care: Perspectives of patients, parents, and health professionals. Inflamm. Bowel Dis. 21, 1641–1651 (2015).

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