Focus on staffing

A study focusing on transitional care in diabetes services in the UK identified that central to best practice in transitional care are staffing interventions, described as relational and longitudinal continuity, that is the existence of a therapeutic relationship with a named professional and good continuity of care from as few professionals as possible consistent with need.23

Young people and carers have identified that the quality of the relationship with a healthcare professional is important.24,–,27 Klosterman et al identified the elements that were important for adolescents in developing a trusting relationship with doctors. They included fidelity, confidentiality, competency, honesty and a global perspective.27 This relationship leads to the development of trust and also nurtures a non-judgmental approach.23

Key to that relationship is continuity. Continuity was highlighted as a key issue by young people with diabetes26 and was considered best practice and feasible in most hospitals in the UK in a Delphi study involving young people with arthritis, their parents and professionals.28 Young people have reported that it takes at least four to five visits before they trust a particular doctor.27 It was reported that young people with diabetes were less likely to be hospitalised following transfer to adult care if continuity of healthcare professionals was actively promoted.29 This could be achieved through joined up working between named healthcare professionals in both paediatric and adult services, for example, joint clinics involving paediatric and adult services, or through a member of staff with a role spanning both services, for example, a specialist nurse or a transitional care coordinator.

Joint clinics were evaluated in the recent systematic review, with only three out of eight studies demonstrating improved clinical outcomes.22 However, the overriding conclusion of qualitative/descriptive studies is that prior to their care being transferred, many young people want to meet members of the adult service and benefit from meeting them.30,–,32 Careful consideration to the organisation of joint clinics is required. Although joint clinics are often seen as the solution, diffusion of responsibility can result in management discontinuity. In addition, the practice of consulting with young people as a multidisciplinary team, which may occur in joint clinics, is mostly experienced negatively.23 A room full of professionals, some of whom are strangers, can be daunting for anyone least of all a young person; conversely, a series of one to one consultations may also be equally unappealing!

A professional with a role spanning paediatric and adult services could likely perform a valuable integrating function. The recent systematic review found such benefit in two out of three studies.22 Transitional care coordinators, as they are often described in the literature, could have a range of skills: they could solely be an administrator to assist young people in navigating the healthcare system by arranging appointments and sending reminders,33 they could be a healthcare professional and provide holistic care,34 or they could be a professional with skills in working with young people, such as a youth worker. In the UK, the specialist nurse is ideally placed to fulfil this role, if workload allows, as they are held in high regard by young people and their carers and are identified as providing good management continuity in comparison to the medical team.23 35

Achieving continuity in staffing has been shown to facilitate management continuity and also was more likely to deliver a more flexible service to meet the needs of the young person.23 This was more likely to be achieved by smaller integrated teams. Where teams were unable to achieve staffing continuity, staff required more formal interventions at other levels.23 In summary, a focus on staffing should be a priority for best practice in transitional care to provide continuity of care through adolescence and into young adulthood.

Focus on service delivery

Adapting the service to meet the needs of young people is another key aspect of transitional care. Both paediatric and adult teams should provide a service that is young person friendly. This is defined by the Department of Health in the You're Welcome quality criteria9 which include opportunities for young people to be seen alone, clinics with other young people and the use of methods of communication preferred by young people.

The opportunity for young people to be seen independently of carers was considered “best practice and feasible in the majority of UK clinics” by young people with juvenile idiopathic arthritis (JIA), their parents and a range of healthcare professionals involved in their care.28 Furthermore, this practice was observed to be a baseline predictor of improvement in health related quality of life (HRQoL) in young people with JIA36 and a determinant of successful transfer as defined by attendance at the first adult clinic appointment in cardiology.37 In a study of 954 patients aged 12–19 years with chronic conditions, 48% of the total variance in transition readiness was explained by perceived self-efficacy in skills for independent hospital visits, perceived independence during consultations, attitude towards transition and having had discussions regarding transition.38 A recent survey in a UK hospital revealed that only 23% of clinicians routinely asked young people if they wanted to be seen alone.39 More worryingly, 43% thought it was not essential and 30% were concerned about the extra time that may be required. Furthermore, only 46% of adult physicians saw young people independently of their parents.40

Age banded clinics are reported to be preferred by young people and are also recommended. The recent systematic review identified positive benefit in three out of four studies that had introduced a young adult clinic.22 However, a recent survey in the UK identified that the number of diabetes services adopting this approach had fallen from 71% to 44%.12 These clinics should also be timed to fit in with school, college and work.26 41

Communication methods are changing. Young people have expressed an interest in communication via email or text.26 41 These methods should reduce the concern that young people express about decreased contact after transfer to adult services.31 ‘Sweet Talk’ is a novel intervention designed to support young people with diabetes between clinic visits using text messages sent to a mobile phone.42 43 Furthermore, the use of web based interventions has been shown to increase self-management skills,44 45 enhance education and awareness of community resources,46 act as a novel means of assessing knowledge,47 assist with information transfer48 and enhance peer interaction.41

Focus on young people

The young person needs to be at the centre of the transition process. A flexible, developmental approach is required that adjusts to the needs of the young person over time and also works with the young person to facilitate change. This is achieved in structured transition programmes. These include individualised transition planning, education programmes and skills training tailored to the needs of the young person and could be assisted by checklists and transition readiness assessments in the future.

Studies of structured transition programmes have reported that participating adolescents are more likely to establish care in the adult healthcare system,31 have better clinical outcomes49 50 and also practice self-advocacy which in turn improves HRQoL.36 An integral part of structured transition programmes is individualised transition planning. This is a collaborative process between the young person, their carers and the healthcare team. Individualised transition planning sets clear goals for young people, carers and providers.46

The structured transition programme and individualised transition planning should address the young person's clinical needs related to having a chronic condition and also psychosocial, educational and vocational issues as well as the generic health behaviours of adolescence and young adulthood. A recent study showed that despite the fact that many clinical outcomes in cystic fibrosis (CF) improve or remain stable during transition, there were still fewer young people with CF in education or employment.51 Similarly, young people with chronic conditions are reported to be more likely than their ‘healthy peers’ to have three or more health risk behaviours52 and this has been associated with non-adherence53 54 and being less likely to attend their first adult appointment.37 Skills in psychosocial interviewing are required by the clinician to facilitate the delivery of holistic transitional care as part of a structured transition programme. Use of a psychosocial screening tool such as HEADS55 can be helpful. Depending on the issues raised by the young person and the skills of the clinician, options include involving different providers from social care, mental health and education and employment, suggesting services that could provide help and support for young people, for instance, Connexions, sexual health, smoking, drug and alcohol services. Simply giving the young person the opportunity to discuss these issues in the consultation56 can be beneficial. There is some evidence that skills in motivational interviewing57 58 and brief intervention strategies59 can be beneficial in addressing health risk behaviours as well as non-adherence.

A recent systematic review identified that condition specific education resulted in positive clinical outcomes in four out of five studies, all relating to young people with diabetes, and that generic education and skills training were effective in two out of three studies.22 In the UK, the Expert Patients Programme, originally for adults with chronic conditions, has now set up the young person equivalent called Staying Positive, which runs workshops created and run by young people for young people.

Checklists can support a structured transition programme.60,–,64 They help identify young people at risk, promote and facilitate opportunities for increasing self-management and track individual young people through the process of transition. From the young person's perspective, they emphasise that it is “OK to ask” about subjects other than disease specific issues, such as substance use, sexual health, etc. Checklists have limitations, particularly due to their self-report nature and lack of objective measurement of actual skills. More recently, there has been a focus on methods of assessing readiness for transition.38 65,–,69 Sawicki et al have published preliminary validation data of the Transition Readiness Assessment Questionnaire, which appears to be useful both to assess transition readiness and to guide educational interventions by providers to support transition.67 Tools are also being designed for specific conditions, for example, the Rotterdam Transition Profile for young adults with cerebral palsy and normal intelligence.70 Such tools will potentially be very useful in transition planning from both clinical and research perspectives.

The timing of the initiation of the transition process and therefore the structured transition programme and individualised transition planning, is important. Most of the guidance documents advocate starting transition planning in early adolescence.6,–,8 In a rheumatology study, greater improvements were observed when planning started at age 11,36 an age when young people are already anticipating and/or experiencing change in the UK as they move from primary to secondary school. The timing of the transfer of care to adult services should be assessed on an individual basis, using measures of readiness, for example, being seen independently from their parents, other evidence of self-advocacy, and condition and management knowledge. There has been little focus on when the transition process should be considered complete. Research on brain development71 and the potential delay associated with having a chronic condition indicate that the mid to late twenties might be a realistic age by which young people should be fully engaged with adult care, but more research is required.

Parents are also making the transition from parenting a dependent child to an interdependent adult. Getting the balance right is challenging for parents of any teenager, let alone those with the added burden of chronic illness and/or disability. A major aspect of this for the parent of a young person with a chronic condition is the gradual move from primary responsibility for health management to enabling the young person to self-care. A shared approach to management should be the ideal,72 with the parent moving from providing all the care to managing the care as the young person begins to participate in care provision. As they become more skilled, the young person takes the role of manager and the parent, that of supervisor and eventually when competent, the young person becomes their own supervisor with their parent the consultant when problems arise. The recent study of transition in diabetes services in the UK identified the involvement of parents in the transition process as key in supporting management continuity. Ensuring that parents continue to have opportunities to be involved is important, particularly when the young person moves to being seen independently.23 Transition planning for parents, similar to that for the young person, has been employed by some researchers and found to be useful.73