The lack of focus on young people as a group with particular healthcare needs in medical training and the health service underpins the difficulty that we have experienced as a profession in improving transition in the UK. This article discusses current progress towards improving training in young people's health in the UK, the evidence base for transitional care in young people with chronic conditions with interventions that focus on staffing, service delivery and young people, a practice based approach for transitional care in young people with learning difficulties and complex needs, the need for monitoring and evaluation of transitional care, and the challenge of funding.
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The word transition is defined as “the process of changing from one state or condition to another”. Throughout our lives we make many transitions – some go smoothly, some could have gone better, some we avoid, some we make happen, some we are in control of, some are forced upon us. A recognised transition spaghetti junction is the time called adolescence, the transition from childhood to adulthood.1
In healthcare we have created another need for transition in adolescence, the transition to adult services. “Created” because health services are designed and health professionals are mostly trained with a focus on either children or adults and not young people. It was described in the recent report by Sir Kennedy as a “phenomenon created by the system”.2 This lack of focus on young people as a group with particular healthcare needs in medical training and the health service underpins the difficulty that we have experienced as a profession in improving transition. Transition in healthcare has been a process to get young people to adapt to us and the services we provide rather than us adapting to the needs of young people.
There is a growing research evidence base to inform practice in adolescent healthcare and transition, although further research is required.3 Where an evidence base is lacking, there are many examples of good clinical practice responding to the needs of young people and their carers, which can inform service development. This evidence base and good clinical practice forms the basis of guidance from the UK government4,–,9 (box 1). However, despite this professional consensus on best practice and the hard work of local clinicians, often without wider organisational support, transition programmes are still not fully integrated into health services. Sir Kennedy in his report on “Getting it right for children and young people: Overcoming cultural barriers in the NHS so as to meet their needs” highlighted the changes in policy, funding and training necessary to enable the flexibility and continuity needed to put the young person at the centre of care, including the need for professionals trained in both paediatrics and the care of young adults.2
Box 1 UK government documents relating to transition
2004 – Standard 4 in the National Service Framework for Children, Young People and Maternity Services (Department of Health, 2004)
▶ Young people supported to make the transition to adulthood and to achieve their maximum potential in terms of education, health, development and well-being
▶ Young people taking responsibility for their own health and making informed choices and decisions regarding their emotional and social development, and health and well-being both now and in the future
▶ Services and staff who are able to respond in a sensitive way, which encourages engagement and provides high quality support for young people
2006 – Transition: Getting it Right for Young People (Department of Health, 2006)
2008 – Transition: Moving on Well (Department of Health, 2008)
▶ Best practice guidances issued to support the National Service Framework document focusing entirely on transition
▶ Transition champions were identified to promote best practice
2007 – Aiming High for Disabled Children (AHDC): Better Support for Families (Department for Education, 2007) and A Transition Guide for All Services: Key Information for Professionals about the Transition Process for Disabled Children (Department of Health, 2007)
▶ Emphasised the government's commitment to improving the life chances of disabled children and young people, whose needs are often complex, not well met or overlooked altogether
▶ The Transition Support Program set up in response to these documents is due to end in 2011
2007 – You're Welcome quality criteria (Department of Health, 2007)
▶ Sets out principles that will help health services become young people friendly
▶ Although there was initially a national drive and some support for services to achieve You're Welcome status, with the recent changes in government, the decisions regarding implementation are now to be made locally
The aim of this article is to review the published literature on transitional care in young people with chronic physical conditions, describe good clinical practice for transitional care in young people with learning difficulties and complex needs, and suggest ways that healthcare professionals could develop the knowledge, skills and behaviours required to make lasting changes to their own practice.
Population requiring transitional care and current status in the UK
Data from the Office of National Statistics and the General Household Survey in 2000 show that the prevalence of disability or long standing illness in children and young people up to the age of 19 was 17–19%.10 A model applied to chronic conditions11 indicates the population requiring transitional care can be divided into three levels of need: complex needs accounting for around 5% of this population; complex chronic conditions accounting for around 25%; and other chronic conditions, with good control, accounting for around 70%. All these young people should undergo a transition process whether their care is to be continued in or organised by primary care or within an adult service in secondary or tertiary care. The transition process should be tailored to meet their personal needs (box 2).
Box 2 Kaiser Permanente care triangle: different interventions for different degrees of need in young people with chronic conditions and disability (Department of Health, 2007)
Level 3: Complex needs (5%)
Care requires health and social care system to work together. This calls for case management, with a key worker actively managing and joining up care for these young people.
Level 2: Chronic conditions – complex disease/care management (25%)
Care requires multidisciplinary teams to provide evidence based care to young people. This means proactive management of care, and following general protocols and pathways for managing specific diseases. It should be underpinned by good information systems: patient registries, care planning and shared electronic health records.
Level 1: Chronic conditions – good control (70%)
Young people can learn to be active participants in their own care, living with and managing their conditions. The majority of young people with chronic conditions fall into this category, so even small improvements can have a huge impact.
Data informing us of the state of current transitional care in the UK are relatively scarce. Audits of transition to adult services in the UK have been performed in either single centres in a single specialty or across services in the same specialty or for the same condition, and mostly focus on the process rather than the outcome. For example, a recent national survey of UK paediatric and adolescent diabetes services revealed that only 76% had specific local protocols for transition and 21% still organise transfer by letter only.12
Training in young people's health
A workforce competent in adolescent healthcare is integral to the provision of transitional care.13 In the UK, undergraduate and postgraduate training in paediatrics, adult medicine and general practice lack focus on young people's health. Reflecting this, surveys in the UK in a children's hospital,14 among specialist trainees in paediatrics15 and among healthcare professionals involved with transitional care in a specialty16 have reported that lack of training is a barrier to the delivery of adolescent healthcare and transitional care. Training in adolescent health has been associated with sustainable, large improvements in knowledge, skill and self-perceived competency,17 18 with higher rates of desired clinical practices, for example, confidentiality, health screening18,–,20 and a greater number of adolescents seen.21
To address the deficit in adolescent health training in the UK, experts launched an e-learning package called the Adolescent Health Project (a collaboration between e-Learning for Health, the Royal College of Paediatrics and Child Health (RCPCH) and other colleges) (http://www.e-lfh.org.uk/projects/ah/index.html). The project contains a range of modules divided into sessions, pitched at different levels to suit the educational needs of a variety of healthcare professionals working with young people.
Work by the Young Person's Health Special Interest Group of the RCPCH is seeking to embed adolescent health within paediatric training. There is currently a pilot for a special elective study module in young people's health for paediatricians and there are also plans to develop generic competencies for all paediatricians in training. On the adult side, training has also been highlighted as a key area by the Young Adult and Adolescence Steering Group formed in 2010 by the Royal College of Physicians (RCP) to tackle the issues surrounding the management of young people and transition from an adult physician perspective.
Best practice in transitional care
Transitional care is a complex process:
The process should consider the holistic nature of transitional care and address both clinical and also psychosocial and educational/vocational issues
The process needs to be flexible and developmentally appropriate to meet the changing needs of young people
The process has also to meet the needs of the parent/carer
The process should span the period from early adolescence to young adulthood: a preparation phase in paediatric care; a transfer phase from paediatric to adult services; and an engagement phase in adult services
Potential interventions to support the process should be considered with a focus on staffing, service delivery and the young person and their parents/carers.22
Designing robust studies to identify the key interventions in each phase that improve clinical, psychosocial and vocational outcomes is a challenge for researchers in the field.3
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
Focus on young people with learning difficulties and complex needs
Many studies have reported the inadequacy of transitional care for young people with learning difficulties and complex health needs. The Michael Report74 clearly described that people with learning difficulties have poorer health than others and find it much harder to access health services. This contravenes the law as well as the fundamental principles of compassion and caring and the provision of appropriate treatment that lie at the heart of professional standards and of the NHS. Parents of young people with learning difficulties and complex needs report that they have often had to fight for the right services, treatment and support for their young person in childhood. Many parents report feeling anxious and threatened as their young person approaches transition to adult services.
Regular health reviews maintain the relationship between the young adult, carers and healthcare providers and lends confidence to carers in continuing to manage ongoing health needs. Primary care teams are now commissioned to provide annual health checks for all people with learning difficulties over the age 18 as a directed enhanced service (DES).
Person centred approaches are a very useful way of putting the young person at the centre of planning. They are recognised as good practice in transitional care documents.5 8 75 76 Person centred planning allows the young person's healthcare needs to be set in the context of their priorities, wishes and broader lives.
Reviews of the literature on transitional care for young people who have learning difficulties or who have complex needs have found predominantly descriptive accounts of transitional care and little to support a research evidence base.22 77 It is unclear whether the evidence from studies of young people with chronic physical conditions such as diabetes mellitus and JIA can be applied to young people with learning difficulties and complex needs. A detailed analysis performed as part of the Department of Health Policy Research Programme by the Social Policy Research Unit78 demonstrated that many multi-agency transition services for disabled young people and those with complex needs are at an early stage in their development, and there is considerable variability in how they are being implemented. This study provides information on aspects of services that are likely to provide a more positive impact for young people and families, and highlights the importance of properly resourced services that provide direct support to young people, offer timely and clear information and support young people until they are settled in adult services.
We describe a practice based approach from Northumberland. In response to the results of a local audit (box 3), a transition healthcare process was developed beginning in year 9 (age 13) (figure 1). This process includes collating and summarising information (the RAP document), promoting the relationship between the primary care team, the young person and their family and carers, and regular holistic reviews.
Box 3 Key findings of the audit of health transition for young people with learning difficulties and complex health needs in Northumberland
▶ Unique as individuals – particular and individual care needs
▶ Healthcare environments can be distressing and anxiety provoking
▶ Healthcare needs to be delivered flexibly
▶ Young people with complex needs under paediatric care are often not well known in primary care
▶ ‘Being known’ and continuity of relationships are important to young people and their families
Monitoring and evaluating transitional care
Monitoring and evaluation should be integral to running a transitional care service.
A priority for the NHS is to identify standards and outcome measures for transitional care covering the three quality domains: effectiveness, safety and experience. These outcomes should reflect both clinical outcomes and also the holistic nature of transitional care through monitoring psychosocial and vocational outcomes. This would allow transitional care to be monitored and evaluated locally and nationally.
Qualitative assessment provides useful information in identifying whether young people and their carers are satisfied with the transitional care service that they have received. Participation of young people as ‘Young Inspectors’ in the evaluation of their healthcare is now recognised as an essential part of ongoing health service improvement and development (see http://www.byc.org.uk/our-programmes/uk/youth4u.aspx) as well as the participation of their parents and other major stakeholders.
In box 4 we have listed potential standards and outcomes that should be monitored and evaluated as part of a transitional care service.
Box 4 Proposed standards and outcomes for monitoring and evaluating transitional care
Measure services against the You're Welcome quality criteria for young person friendly health services (Department of Health, 2007)
Measure services against standards set out in Department of Health transition documents
Include opportunities to be seen alone, transition planning and psychosocial screening and transfer summaries
Effectiveness and safety
Attended first two appointments in adult service
Engaged with adult services 1, 2, 3 years after transfer
Markers of condition/disease control
Complications of condition/disease
Unplanned hospital admissions
Patient reported outcomes
Assessment of disease/condition knowledge
Assessment of self-management and advocacy
Assessment of quality of life
Young people and their carers' satisfaction with transitional care
Funding transitional care
We are at a time of change for the funding of healthcare. The Health and Social Care Bill 2011 plans that primary care consortia in England will determine which pathways of care will be funded. Services require adequate funding to achieve best practice in transitional care. An important task for health economists is therefore to identify the cost effectiveness of various interventions for different populations of young people so that funding can be negotiated appropriately.
The personalisation agenda79 puts the individual young person right in the centre and changes the power dynamics whereby the young person, as an important part of their community, defines their priorities including which kinds of care they find helpful, rather than being given what is felt by professionals and others to be good for them. The development of direct payments and individualised budgets means that adults, and increasingly young people, will have ownership and control of the budget for their care needs including, in the future, their healthcare needs. It may be a challenge for health services to be nimble enough to respond to the stated needs of a huge variety of young people who will be in the position to vote with their feet and their budgets.
The different providers will include local and national voluntary and community services, social enterprise and private providers. Unfortunately the huge disadvantage of a competitive environment is that it discourages the collaborative, co-operative and co-ordinated working together that is so important for transitional care.
The transition from paediatric to adult services is a key period for any young person diagnosed with a chronic condition in childhood. Despite a strong professional consensus on best practice informed by a growing body of research evidence and good clinical practice nationally, transitional care programmes are still not fully integrated into clinical services. Key to improving transitional care are the healthcare professionals themselves. The importance of adequately trained healthcare professionals working with young people cannot be underestimated. Although the evidence base needs expansion, this should not delay the introduction of good clinical practice. As the health service is undergoing yet another reorganisation, strong clinical leadership is paramount. Nationally, groups working under the auspices of the RCPCH and RCP will ensure that transitional care and, more importantly, transitional care as part of improved adolescent and young adult healthcare, is kept on the national agenda, while locally it falls to willing and able clinicians to negotiate a deal for young people and transitional care.
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