Lost in transition? Access to and uptake of adult health services and outcomes for young people with type 1 diabetes in regional New South Wales

Young people with type 1 diabetes mellitus (T1DM) experience major life transitions in their late teens, around the time they lose access to paediatric health services. Subsequent poor engagement and early loss of contact with adult services has been linked to poorer self-management and outcomes.1

Adult diabetes services vary across geographical settings, but there has been little study of these different treatment models and their outcomes for transitioning young people. After puberty, microvascular complications increase, and continuing surveillance and optimal diabetes control are essential.2-4 Regional services are more likely to be general practitioner-led, with varied access to multidisciplinary specialists. Resource and staffing constraints are generally more pronounced in regional areas and there are few transition programs.5 Abrupt transfer of young people with T1DM from paediatric services to unfamiliar adult systems without structured preparation does little to encourage engagement.1,2,6-8

Adult diabetes services focus on self-management skills and avoidance of long-term complications, often predominantly targeting the majority population of older people with type 2 diabetes. Young people may not have the organisational skills needed to navigate the health care system,9 may experience difficulties,1,10 and may fail to connect or quickly lose contact with adult services.2 This has been linked with poorer self-management and diabetic control, resulting in early development of complications.4 Dedicated transition services have demonstrated improved outcomes.11

Given the increasing incidence of T1DM and high associated mortality,12 but a lack of information about service models, their uptake and outcomes, we audited the case notes of young people with T1DM in the state capital, a major city and a regional area of New South Wales to compare planned and unplanned service contacts and key diabetes-related indicators.

This study is the first in Australia to examine disparate facets of care for young people with T1DM beyond the age of eligibility to use paediatric services. Different service configurations and resources in the three geographical settings were reflected in clear patterns across the audited period. There was limited access to adult services and contact with specialist staff in the regional area, with many young people not receiving any reviews each year. Acute hospital services were used for crisis management in all settings, but much less frequently in the capital. Despite elevated HbA1c values in all areas, many young people experienced episodes of severe hypoglycaemia. Service practices limited our ability to identify loss to contact between paediatric and adult services, but attrition from adult services appeared to be around 50% by 5 years, and was significantly greater in the regional area.

Similar disparities in care for rural residents have been reported from the United States.14 Many health services report resource constraints, and the particular difficulties of regional and rural areas — widely dispersed populations and health centres, limited transport and greater difficulty attracting specialist personnel — are well known. The urban services we studied had larger target populations, more specialist staff, and clinics in the public health care system capable of undertaking all or most complications screening. By contrast, as previously reported,5,15 regional diabetes services had fewer resources, heavier reliance on GPs and limited access to specialists. Distance and geographical socioeconomic factors have been acknowledged as major issues in access to diabetes services, and strong predictors of attendance.2

Our findings contrast with a report of paediatric patients in NSW, which found no difference in the metabolic control of rural and urban children (median HbA1c, 8.2% in both).16 Median HbA1c values in our three cohorts, particularly in the regional area, were substantially higher, highlighting the challenges of chronic disease self-management in early adulthood1 and the deterioration in control that occurs when young people leave the comprehensive paediatric rural outreach clinics.

Overall, we found that recorded routine service delivery fell short of that advocated in national and international guidance.4,13,17 National recommendations stipulate no less than 3–4 reviews per year for adolescents;4 adult T1DM guidelines have not been established, but we found that not even annual review was always achieved in the regional area. Potentially avoidable acute service use for crisis management represents opportunity costs that could be invested to redesign services to better meet the needs of this group.

All three settings showed evidence of poor glycaemic control. The capital service had the greatest proportion of recently diagnosed users, whose “honeymoon phase” values may have contributed to greater numbers of HbA1c readings within target ranges. However, our findings are comparable with other studies of adolescents and young adults from Australia and elsewhere.3,11,18 The risk of progression to severe diabetic retinopathy in the Diabetes Control and Complications Trial follow-up study was reduced by 78% in the group originally treated intensively, demonstrating the longer-term value of good control.19 Services should consider ways to make access easier for young people and to maintain contact, as this provides the best chance of achieving better control, given that deterioration in diabetes indices around this age seems common.1 The poor retention rates demonstrated in our study and others indicate this is not occurring.2,7,20

Our findings suggest a likely mix of developmental characteristics of youth and system failures of current service models to engage, retain and support these young people. The Newcastle and Sydney services included specialised clinics for young adults, and all centres stated they were proactive in following up patients who failed to attend. However, neither strategy appears to have solved the retention problem. More important may be the manner in which clinics are run. Transitional services that address young people’s priorities and lifestyle requirements can sustain users’ engagement with services, lower drop-out rates, improve uptake of educative and preventive services,21,22 and improve diabetic control.8,11 Innovative examples such as the Maestro Project in Canada,22 which used a case management approach to service coordination and social educational networking, have shown this is achievable for young people in regional areas.

Our study has some limitations. The sample sizes of our groups were small, and a documentation audit only shows what was recorded and may not reflect user and stakeholder experiences. Any service redesign would need to take into account what service users say would be useful to help them achieve better long-term diabetes control. Auditing was particularly problematic where regional service records were fragmented and hard to access, and in general practice.

Although our study found key indices of diabetes management were poor in all settings, there was substantially lower access to and uptake of routine monitoring and preventive services in regional compared with urban settings. In regional areas, adolescents transfer from multidisciplinary “one-stop shop” paediatric outreach clinics to very differently configured adult diabetes services, and attrition is high. Coaching is needed to prepare young people for these changes, as well as improvements in service coordination and appointment of case managers to help them navigate adult care. Specialist diabetes health care professionals are in short supply, and GPs need to be supported to develop T1DM expertise. Our findings do not support continuance of the status quo and suggest service reconfiguration is needed, to ensure equity of access for the small but increasing numbers of young people with T1DM in regional Australia and to achieve acceptable outcomes for all Australians with T1DM.

3 Proportions of young people contacting adult health services at least once a year in each of the first 6 years of contact, estimated in two different ways

A: The total eligible according to their age at each time point. B: Those eligible by age but excluding those thought to have moved away from the area.