Abstract
Introduction: Type 1 diabetes (T1D) is a chronic, incurable autoimmune condition, typically diagnosed in childhood and managed in paediatric services until ages 16–18 years, when young people (YP) transition to adult services. Maintaining tight glucose control and avoiding hypoglycaemia is challenging around this time as YP face psychosocial challenges and significant life-stage changes. International guidelines suggest that YP and their clinical teams need to prepare and plan for transition whilst building care continuity and supporting resilience and independence of YP to maintain glycaemic control during this vulnerable life-stage.
Approach: We conducted a multi-methods study to understand the level of care continuity and integration at transition to adult services for Australian YP living with T1D. The study included a co-designed national survey of YP living with T1D across all states and territories of Australia undertaken in 2023, one-on-one interviews with 15 YP and a survey of service leaders. The surveys were developed in REDCap and made available online. YP were recruited via diabetes related organisations such as the Juvenile Diabetes Research Foundation, Diabetes Australia networks and the National Diabetes Services Scheme. Service leaders were recruited via clinical networks.
Results: YP aged 14 – 25 years (n=226; 70M, 151F, 5 non-binary) from seven states and territories of Australia completed the survey. Approximately half (111, 49%) had transitioned to adult services and of these, only 21(23%) felt that they had been well prepared for transition, 9(8%) said transition had never been mentioned, and only 22(24%) had a written transition plan. Only 16(14%) met the adult team prior to transitioning. YP described lack of care integration when accessing adult care: "I just want a bit more certainty... I just want to know that every time I go to my appointment, I will have an appointment." (YP on accessing adult care in a regional city).
YP had significant psychosocial complexity in addition to their T1D. Many had been referred to psychological services for depression (45%), anxiety (37%), suicidal thoughts/self-harm (22%), disordered eating (19%), and family stress/trauma (20%). The survey of 32 service leaders confirmed a lack of comprehensive preparation for transition: only 8(25%) of services provided structured transition preparation programs, and only 3(9%) followed up on the YP and their retention in the adult service. Although the majority of providers (69%) assessed YP for transition readiness, 5 said transition would occur even if the YP was not ready. Concerningly, some YP were given the wrong medical advice about managing their T1D by adult physicians.
Conclusions: Preparation and planning for YP transitioning to adult services is sub-optimal and inconsistent in Australia, creating gaps in care continuity and integration. This puts YP at risk of hypoglycaemia and disengagement with health services. This has significant implications for the development of complications in later life. YPs presented with significant psychosocial complexity, which was not adequately addressed, and they faced uncertainties when accessing adult services for their T1D. Understanding care continuity for their psychosocial needs requires further research to inform new interdisciplinary models of care.