Type 1 diabetes is a lifelong, chronic condition and the most common endocrine disorder of childhood (Edge et al., 2013) with a peak onset during adolescence. Worldwide, the prevalence of type 1 diabetes in children and young adults has doubled in the past 25 years and is expected to double yet again in the next 15–20 years (Patterson et al., 2009). Diabetes complications increase the costs to the NHS more than fivefold and significantly increase the demands on hospitals. The total expenditure on diabetes complications is estimated to account for 10% of the NHS budget (Hex et al., 2012). The management of this chronic, complex condition can be challenging for children, their families/carers and healthcare professionals, and treatment priorities and strategies must be adapted throughout their journey to adulthood.
Adolescence and Diabetes – Why does glycaemic control deteriorate?
Adolescence is the period of transition from childhood to adulthood. It is a time of great change in biological, social, emotional and psychological terms. This period imposes unique challenges on the adolescent/young person, their families, and the health care professionals. Self-management of Type 1 diabetes mellitus is difficult and complex, particularly during adolescence, where a marked deterioration in glycaemic control is common (Morris et al., 1997; Thompson et al., 1995).
The high fasting insulin levels noted in early puberty contribute to increasing insulin resistance even in non-diabetic adolescents (Hindmarsh et al., 1988). Dunger et al has shown major changes in insulin-like growth factor (IGF-1) binding protein and growth hormone concentration in association with the pubertal growth spurt (Dunger et al., 1993). Body composition can be quite marked in diabetic adolescents, particularly in females (Gregory et al., 1992).
Young people go through complicated psychological changes such as erratic eating and exercise patters, family stressors, self-image problems during adolescence. These changes influence their psychosexual development, their personal identity and the way they process information about themselves, their world and the future. Young people with a chronic condition are also shown to be more likely to engage in risky behaviours such as alcohol and substance misuse (Garvey et al., 2013). 70% of premature deaths in adults are largely caused by behaviours started in adolescence (WHO, 2008).
Even with advancement in technology with pumps or pens, Borus (Borus, 2013) argued that the adolescent may find it difficult to manoeuvre the task, as they go through significant transitioning in terms of cognitive and neurological development (Borus & Laffel, 2010). However, Laffel reported that some adolescents do develop the key skills for successful diabetes management and problem-solving quickly (Laffel et al., 2003).
Emotional health is challenged during adolescence and even more so in the presence of diabetes. Young people with diabetes have higher rates of depression (Mayou et al., 1991) and they have poor glycaemic control. Eating disorders are common in late adolescent and young adult women (Striegel-Moore & Huydic, 1993).Young people with chronic illness report a lower quality of life and also a disruption in their family structure (Meleski, 2002). Alcohol, tobacco and illicit drug use is a serious concern during high school years (Martínez-Aguayo et al., 2007) and combined with diabetes will result in unpredictable glycaemic control (Ismail et al., 2006).
The development of other associated autoimmune conditions especially thyroid problems, Addison’s disease occurring during adolescence can contribute to deterioration of glycaemic control (Greene, 1997).
Newly diagnosed adolescent children around the time of pubertal development are increased risk of developing complications (Salardi et al., 2012). Although the rates of clinically apparent diabetes complications are low in adolescents, we have started to see some evidence of early microvascular complications in our clinic.
Family support is crucial at this time and comprises “behaviours that foster, in an individual, feelings of comfort and belonging, and that he or she is basically accepted and approved of as a person by the parents and family” (Skinner et al., 2005). Research shows a bell-shaped response to family support, with both those getting too little and those getting too much tending to do less well in terms of diabetes management (Gustafsson et al., 1987). Recurrent diabetic ketoacidosis is a significant risk, especially in girls, and those from lower socioeconomic backgrounds or with pre-existing psychosocial issues (Chapman et al., 1988).
The process of transition from a paediatric service to adult care can be traumatic for young people with diabetes, who commonly fall between services (McDonagh & Viner, 2006). NICE guidelines (NICE, 2015a)recommend that children and young people with Type 1 diabetes should be offered an ongoing integrated package of care by a multi-disciplinary paediatric diabetes care team; this includes smooth transition from paediatric to adult services.
Blum et al defines “Transition as a purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-orientated health care systems” (Blum et al., 1993). Effective transition has been shown to improve long-term outcomes (Harden et al., 2012)and to improve the YP experience. Adolescents are a unique age group who have needs which differ from both those of adults and of children (Skinner et al., 2000). The National Service Framework (NSF) for Children and Young People (NSF, 2004) recommends that transition be a guided, educational, therapeutic process, rather than merely an administrative event. The recent CQC report on transition states adolescence and the move to becoming a young adult is increasingly being recognised as a distinct developmental phase, much as children under five or older people are well-established with care needs adapted appropriately(CQC, 2014)
Transition is a time of great stress because many of the systems upon which young people have grown to depend are to be withdrawn (While et al., 2004). Transition happens at a time where they gain greater choice and autonomy in their life as they become more independent. The lack of training is perceived as one of the main barrier to delivery of transitional health care (McDonagh & Viner, 2006).
It is well documented nationally that young people with chronic conditions have increasing problems in adherence to treatment and can opt out of the care process in the first two years after transfer to the adult service (Kipps et al., 2002). This can lead to increased risks in the likelihood of developing the short and long term complications associated with diabetes. The National Service Framework for Diabetes (NSF, 2004) Standard 6 highlights transitional care as an integral component of care for all young people and stresses the importance of smooth effective transition organised in partnership with the young person.
The National diabetes transition audit published recently (NDTA, 2017), which links data from the NPDA and NDA for the audit period between 2003 and 2014 demonstrated that, post-transition, young people are less likely to undergo annual HbA1C measurement; less likely to achieve blood pressure and cholesterol targets; and more likely to have an admission for diabetic ketoacidosis (DKA). A Canadian study involving 1507 young people with diabetes showed a significant increase in hospital admissions (from 7.6% to 9.3%) in the first 2 years following transfer to adult care (Nakhla et al., 2009).
The MDT supporting best practice tariff (Randell, 2012) stops at the age of 19 and psychology support as well as the DSN:patient ratio and available clinical slots ceases in the vast majority of services from the age of 19 onwards in the united kingdom.
Young adulthood is the first time they have to become entirely responsible for managing their own care needs very often outside the security of family life and it is important to ensure they enter the adult service equipped with the right knowledge, information and support. They will also enter the adult service as a minority group for which there is no adolescent specialist practitioner (Forbes et al., 2001). This highlights the need for supporting these young people to be able to engage well at appointments and understand the differences in the adult health care setting.
We need adequate resources and training of the health care professionals (Campbell & Waldron, 2013) to deliver good quality care and to support the medical, emotional and psychological needs of children, young people and their families.
A holistic view of the patient should be considered given the challenges. The adherence rate could be increased if young people met adult physicians meet them before transfer.
complications could follow for a generation, assuming maintained levels of glycaemia of 65 mmol/l or less without major hypoglycaemia after the initial 10 years of therapy (Winocour, 2014)
Studies have found that parental involvement is the single most important predictor of positive adolescent health outcomes (Silverstein et al., 2005; Weinger et al., 2001) at a critical time when metabolic control and adherence can deteriorate. Additionally, Wysocki (Wysocki et al., 2008) argued that over-involvement by parents can feel intrusive and conflict with an adolescent’s developing sense of autonomy.
Transition will need collaborative support through medical, educational and psychological services, with engagement needed between paediatric and young adult services to provide continuity of care.
Evidence for transition
From conducting a detailed search on the medical databases, I found more than thousands of expert opinions or research (primary or secondary), but most of these do not look at effectiveness of service models or interventions. There appears to be too few good quality studies on transition (Lyons et al., 2014). However, there are some review articles (See table 1 in appendix) focusing on components of transitional care and the effect on biomedical outcomes, patient satisfaction and loss to follow-up (Bloom et al., 2012; Nakhla et al., 2008; Watson et al., 2011). Most of the studies were descriptive rather than evaluative and had poor research design. Some were carried out in a number of countries, which makes it difficult to generalise to other settings including UK. These studies focused narrowly on health outcomes and lacked a holistic approach. Overall, these studies gave tentative evidence for the positive impact on health outcomes however offered little insight into the solutions and challenges facing young people. Future research should explore the complexity and details of interventions during transition which should help health care professionals and managers understand how to implement and sustain this care within organisations.
Our Current Transition service
Our paediatric diabetes service serves a population of approximately 140 children from 0-19 years. Before 2014, Our service lacked a clear structure and young people with diabetes were transferred to the adult clinic at around 18-19 years of age through a simple transfer letter. Moreover, there were high “do not attend’ (DNA) rates and drop outs from the young adult clinic.
Parental involvement was variable and information given to young people with diabetes were quite patchy using didactic consultation techniques which are rarely effective (Stewart 1995).
Our current practice is to start discussing transition with adolescents and their family at around the age of 13. We have changed our transition pathway and policy based on the NHS Diabetes transition framework published in Jan 2016.(Specification, Jan 2016).
We do monthly joint clinics with our adult colleagues for young people between 16-19 years which happens in children’s service and formally transfer them to the young adult clinic which covers from 19-25 yrs of age.
We are in the process of adopting tools of transition similar to the ready, steady, go programme developed by the University of Southampton.
The main problem we face is the issue of capacity over demand. We are currently running 1-2 transition clinics a month with 5 slots per clinic. Those who miss the appointments will be seen in an adolescent clinic run by the paediatric team. We have had a new adult physician, specialist in pump therapy and we are in the process of setting up a pump transition clinic. The young adult clinic (19-25 years) is run by the adult diabetes MDT with 1 DSN looking after 250 young people. We look to the future and the hope that we can work with our adult colleagues to improve their resources and the outcomes for young people.
How to Improve our service -The way forward
I strongly believe in the following recommendations/changes for our transition service to be a successful model.
Policy on start of transition
Although a flexible approach is important with regards to the developmental readiness of the young person, studies show that starting transition at around 11–12 years of age leads to better knowledge and skills, resulting in improved long-term outcomes(Shaw et al., 2014).
This ensures the young person and their families have more time to prepare for adult services and can move through the process at their own pace. NICE guidelines on transition recommends that, (NICE, 2015b) transition support should be strengths-based and focus on what is positive and possible for the young person rather than on a pre‑determined set of transition options. The National diabetes training audit (NDTA, 2017) recommends that paediatric services should ensure that the young person remain in their care until at least 16 years of age before transition.
Preparation and structured education programmes
Transition should be adolescent/young person-centred and should address the medical, psychosocial and educational/vocational issues facing the individual young person as they grow up and eventually move out of child-centred services. Young people should be engaged in design, implementation by peer support, coaching and mentoring, advocacy and the use of mobile technology. Our transition service should satisfy the quality criteria as set out in ‘You’re Welcome’ Quality Criteria for Young People Friendly Health Services’ (DH, 2011).
The University hospital of Southampton (Diabetes & Transition) has developed a transition planning template to facilitate transition from paediatric to adult care; this includes a checklist for the paediatric provider, a list of key health information to be transferred, and patient information resources designed for this age group (See Appendix 1).
A named key-worker should take sole responsibility to support the young person around transition. This can be any member from the paediatric or the adult diabetes team. Structured transition programme as shown by (Sequeira et al., 2015) had a positive impact on HbA1c, attendance and well-being. They should include advice and direction on the management of diabetes and various life-style issues;
Alcohol, smoking cessation, avoidance of recreational drugs, pre-pregnancy planning, contraception, work and diabetes, extreme sports and diabetes.
We also felt the need to move away from ad-hoc didactic teaching to alternative approaches to suit the current lifestyle of young people and adolescents.
Education/Training of Health care professionals
All health care professionals delivering a transition service (including adult MDT) should be trained in paediatric diabetes and working with young people, including managing risk taking behaviours. The following e-module was commissioned by the Department of Health and delivered by Health Education England e-Learning for Healthcare (e-LfH) in collaboration with a consortium of professional bodies. (http://www.e-lfh.org.uk/programmes/adolescent-health/).
All clinic consultations should be for at least 30-45 minutes with some time spent with the young person alone. This can be offered at an appropriate time depending upon the emotional maturity of the young person. The confidentiality rules should be explained to the young person when they are being seen on their own.
Psychological support for young people should be incorporated into the multidisciplinary team routinely rather than an ad-hoc or reactive approach. Motivational interviewing integrated to routine care (Channon et al., 2007) can be an effective method of facilitating behavioural changes in teenagers with type 1 diabetes with subsequent improvement in their glycaemic control.
Transition Pathway and plan
Each young person should have an individualised care plan including achievable individualised goals. Patients should have a written ‘transition plan’, which outlines the timing of key phases of the transition process, the expected time for the eventual transfer and details of any specific concerns, queries or requirements that the young person and their families, have in relation to the move to adult services. Structured transition programme as shown by (Sequeira et al., 2015) had a positive impact on HbA1c, attendance and well-being.
Yorkshire and Humber Transition tool kit (Stepping stones) and Ready steady go Hello (Southampton) (Nagra et al., 2015) are the two well-known established transition toolkits being widely adopted by the diabetes units in UK. Ready Steady Go has been implemented within a large NHS teaching hospital in the UK, where it is now established as part of routine care.
There should be plans in place to identify early signs of disengagement from the service and how to escalate using clear standards/policies. Young people should be encouraged to engage in designing and improving the system by involving them in networks.
As we all are aware, social media plays an enormous role in day to day life of young people. The organisational aspects of transition need effective administrative support with regards to sending appointments, use of social media, maintaining a database and availability of medical records.
Tools for transition
Yorkshire and Humber Transition tool kit (Stepping stones) and Ready steady go Hello(Southampton)are the two well-known established transition tool kits proven to improve outcomes for transitioning adolescents. Ready Steady Go has been implemented within a large NHS teaching hospital in the UK, where it is now established as part of routine care. It is also being adopted widely across the UK.
The National Transition audit (NDTA, 2017) has highlighted the need to have clear transition pathways designed to make the process user-friendly, but focused on sustaining stable HbA1c levels and minimising DKA risk.
A tracking system to ensure that young people do not get lost from follow up, including a policy for ‘did not attend’
One of the key components of a transitional care programme is a written Transition Policy as transition is multi-disciplinary and involves multi-agencies. Our current policy should be upgraded to include existing resources and potential challenges and implementation of the policy. Adult providers need to be involved in the development of the written Transition Policy for the paediatric team to be informed of the adult practice, and vice versa. This will ensure both continuity of care and that young people and their families can be appropriately prepared.
The department of health “You are Welcome” Quality Criteria for Young people Friendly health services (DH, 2011) is a useful resource which our service is currently working on. We are working towards re-designing a part of our children’s outpatient service to be young people friendly.
Cohesive, collaborative diabetes transition service
Young adults tend to decrease the frequency of contact with their diabetes care provider after transition to an adult program, and those with fragmented care have poorer glycaemic control and a higher rate of hospitalisation (Nakhla et al., 2009). We need to have a more unified approach in providing an adolescent or young adult clinic with members of both professional teams working together to facilitate smooth transition. The National diabetes training audit (NDTA, 2017) recommends adult services should ensure that young people with diabetes have transitioned into their service by 19 years at the latest. NICE also recommends age-banded clinics for adolescents and young adults jointly with their adult colleagues.
The University hospital of Southampton (Diabetes & Transition) has developed a transition planning template to facilitate transition from paediatric to adult care; this includes a checklist for the paediatric provider, a list of key health information to be transferred, and patient information resources designed for this age group.
NICE 2015 (NICE, 2015b) recommends a key worker (PDSN/Dietitian/DSN) who can liaise between both services. To discuss with adolescent and parents well in advance and being flexible
Clear documented plans including summary of the adolescent’s medical history, relevant results of complication screening, information on co-morbidities.
Integrated Patient care pathway to facilitate collaborative working between primary (GP and community nursing), secondary care (Paediatric and Adult teams)(Cameron et al., 2014). By having a clear pathway that has timely appropriate education and informs the young person about the differences in adult care, the hope is that more young people will continue to engage with care providers and thereby improve their personal health outcomes (Dovey-Pearce et al., 2005).
Maintaining a transition and young adult database and a named health professional should ensure accountability and to identify and locate the young people who fail to engage with the team.
The organisational aspects of transition need effective administrative support with regards to sending appointments, use of social media, maintaining a database and availability of medical records.
We need to think about how we deliver transition service to young people with type 2 diabetes, pregnant young women and young people with cystic fibrosis and post-transplant diabetes. The above mentioned should have an individualised approach.
Most study groups recommend the end of transition around 24-25 years, usually coinciding with the finishing of tertiary education. A considerable number of young adults disappear from the service during this crucial period and re-emerge with complications later. The adult diabetes service is often unable to cope with additional workload. We need to look at designing new models where general practitioners manage type 1 diabetes.
Evaluation of impact
The efficacy of our transition clinic should be determined by the following outcomes measured pre-and post transition
- Glycaemic control, as evidenced by HbA1c
- Attendance rates
- Completion of care processes
- DKA admissions
- Compliance with transition pathway
- Reduction in complications (e.g. retinopathy and nephropathy)
- Young person and their families experience – Surveys
- Compliance of usage of transition tools
- Adolescent health care training compliance for health care professionals
- DATA submission to National diabetes transition audit
- Measurement of Quality of life for the young person and their carers using an evidence based questionnaire.
The data can be used to assess our current service provision, identify gaps, areas for improvement and to develop new models within the service. Also, this will help guide our commissioners to develop, improve, implement and embed good practice for transitional care.
Transition is a complex process that cannot be addressed by a single intervention and should focus on the developmental and psychosocial needs of the young person. Despite the evidence of the risks of poorly managed transition services and availability of potential solutions, majority of the diabetic units in UK are finding it challenging to run an effective service. Most of this strategy don’t need extra money or investment, but can be achieved using existing services and resources in a different manner. However, the restructuring of the service requires time, dedication, patience and a lot of engagement with young people with diabetes.
There should be little time spent in re-creating the guidance wheel in terms of improving practice and more groundwork should be done to make transition better for young people with diabetes.