Gathering expert opinion to inform benchmarks to support transitional care

Abstract

This study aimed to (1) explore views of known experts leading on transition, (2) gather insights on the essential features of transitional care models and (3) highlight opportunities for and barriers to change: to inform core elements of benchmarks for transitional care. We held three workshops (n = 20) and used a telephone interview (n = 1) with health and social care professionals with expertise working with young people with a range of health conditions and disabilities. The workshops included individual brainstorming and group discussion. Data were analysed using qualitative content analysis. The general consensus from stakeholders’ discussions about transition was that ‘things have become stuck’. Themes included: professionals’ attitudes towards and knowledge about young people and transition, organizational barriers and ‘lack of joined-up thinking’ between services. Our work offers further insight into experts’ perceptions of transition services within the United Kingdom. It is clear that there is still much to be done to improve transition, to better meet the needs of young people and parents and begin to offer equitable access to transitional care programmes. The benchmarks offer a starting point for professionals seeking to improve transition through enabling the identification of gaps in services and providing a platform to share successful practice initiatives.

Keywords

Adolescents chronic illness focus groups transition workshop young adults

Introduction

The concept of transition includes a gradual, purposeful process of empowerment that equips young people with the skills necessary to manage their own health (Blum et al., 1993). Ladores (2015: 126), as a result of a concept analysis, offers the following definition of transition:

a potentially stressful and emotional process in which flexibility and negotiation between the patient, parents, paediatric healthcare providers, and adult healthcare providers are necessary in order to facilitate achievement of autonomous health-related decision-making and self-care within the adult healthcare setting.

Despite the growing evidence base and apparent universal acceptance of the concept of transition, the implementation of transitional care remains a challenge (Gleeson and Turner, 2012). Transition services continue to be described as uncoordinated, rather than a process of preparation in which young people are involved, where appropriate adult services are not always available and variation exists across clinical specialisms (Care Quality Commission (CQC), 2014): Such experiences are comparable across young people with a range of diagnoses and from different countries (Fegran et al., 2014).

Current approaches to transition have been described within three categories (Royal College of Nursing (RCN), 2013): an abrupt transfer to adult services; staying in the paediatric area longer than appropriate; and leaving medical supervision altogether, voluntarily or by default. All three are associated with impact, short- and long-term, on young people with a health condition as the receivers of these services. Simple transfer may result in increasing anxiety for young people, this immediate change in a relationship with professionals, often one that is long-standing, can leave them feeling isolated from their normal support mechanisms, and they may worry that the adult healthcare team will not be able to meet their needs. So, for some, remaining with a healthcare team they know maybe their preferred choice. There is however the potential for delayed development into adulthood, and although they may feel safe in an environment and with people they know, some of their needs may not be met if they stay with a child-focused team too long. Disrupted care, or care that no longer meets their needs, can lead to disengagement from services and may result in deterioration in health. Seamless continuity of care is the aim of transitional care. It is necessary for young people to assume responsibility for their ongoing care or chronic care management, a gradual process, a process that is more complex than a simple transfer of care from one service (child focused) to another (adult focused). For health professionals, there is a need to deliver ‘youth-friendly care’, care that is respectful of and responsive to the preferences of young people, their needs, values, developmental level, capacity and interest; this rests upon meaningful participation and is underpinned by staff attitudes, communication and age-appropriate environments (Ambresin et al., 2013).

Over the last 20 years, numerous policy documents have been published in the United Kingdom aimed at improving transitional care. Similar policy exists in other countries, with Australia and the United Kingdom the only countries at that time to describe transition strategies (Hepburn et al., 2015). Consistent across policy is a focus on presenting the core principles of transitional care. All highlight the difficulties faced by health professionals and to some extent offer practical suggestions in terms of a preparation phase in child care, a transfer phase from child to adult services and an engagement phase in adult services (Gleeson and Turner, 2012). The latest of these documents in the United Kingdom, guidance from the National Institute for Health and Care Excellence (NICE, 2016a), shares similar principles of good practice; now captured in a set of quality standards (NICE, 2016b) being used within a number of hospitals to underpin practice (see, for example, https://10stepstransition.org.uk, http://www.leedsth.nhs.uk/patients-visitors/our-hospitals/leeds-childrens-hospital/young-people/transition-moving-to-adult-services/). Despite these promising and innovative practices, evidence continues to highlight that young people often struggle to transition to new services (Zhou et al., 2016). The policy documents have gone some way in attempting to tackle gaps in service provision that have been described as a ‘healthcare crisis’ (Scal, 2016), but they are not sufficient for change (Hepburn et al., 2015). A shift in focus might now be called for, the adoption of a greater developmental focus – a life course approach, rather than the institutional focus – changing service provision, which currently prevails (McDonagh et al., 2016).

There have been two helpful international Delphi exercises informing this aspect of care (Fair et al., 2016; Suris and Akre, 2015), added to which are a growing number of reviews: For the most recent, see Coyne et al. (2017), Le Roux et al. (2017) and Kerr et al. (2017). However, there remains an absence of high-quality studies and empirical evidence. There is a lack of agreed transition outcomes and related measures (Kolehmainen et al., 2017). A recent Cochrane review found just four small studies fitting the inclusion criteria (Campbell et al., 2016). Intervention studies are, however, now emerging (Kreuzer et al., 2014; White et al., 2017), with some evidence to suggest that strategies focusing on preparing young people developmentally have a more positive impact on outcomes (Krall et al., 2017). Benchmarks for transition have been described as a good starting point (Kolehmainen et al., 2017). Benchmarking offers a structured form of networking, facilitating the sharing and comparing of best practice (RCN, 2007). Benchmarks can enable professionals to share common difficulties and offer each other practical support and encouragement, in this case when developing transitional services. The journey from evidence to effect (Davis et al., 2003), we would argue, can be facilitated through the use of benchmarks. Policy frameworks are not sufficient for change (Hepburn et al., 2015). We describe here the views of professionals, gathered between 2012 and 2014, that were an essential part of the foundation that informed our final benchmarks, launched in December 2014 (www.transitionstudy.co.uk).

The study

Our study was concerned with the development of a clinical practice-benchmark ‘tool’; a ‘tool’ that would combine evidence from research and policy to facilitate transitional care (Aldiss et al., 2015). We sought the opinion of three discrete groups of experts in the development of the benchmarks: (a) professionals involved in either researching transitional care or influencing policy and practice; (b) healthcare professionals involved in the delivery of transition programmes; and (c) young people aged 13–21 years with a long-term health condition and their parents. In this article, we report from professionals who formed group (a). Findings from the other groups are reported elsewhere (Aldiss et al., 2015, 2016).

Aims

To explore views of known experts at the forefront of leading on transition in the United Kingdom.

To gather insights on the essential features of models of transitional care.

To highlight opportunities for and barriers to change.

Methods

Design and theoretical framework

This was a qualitative study. The sequential transition model (Figure 1) provided a focus for our enquiry and was used during our analysis (While et al., 2004); chosen as it resonated with the authors’ clinical experience. This approach to transitional care recognizes that the young person’s needs change as they are given increased autonomy in making decisions about their care and they become an ‘expert’ in managing their condition. Young people therefore require preparation if they are to adjust to this new role and adult care successfully.

Figure 1.

Sequential transition model (While et al., 2004).

Participants, recruitment and setting

We sought professionals who could reflect upon transitional care within the United Kingdom, in terms of practice, policy and research: We aimed to identify a broad range of experts across these three areas. We approached known experts in transitional care, defining expert as having published a paper on transition, been involved in writing UK policy/guidance documents on transition or led on practice initiatives within transitional care. Our sample was identified through multiple sources, using published work and national groups. Once identified, we used snowball sampling; initial contacts informed us of other experts undertaking work in the field of transition. For example, one contact from a charity was able to identify other experts involved in writing transition guidance/policy based at other charities. The experts were invited by email.

Each workshop was undertaken in a University setting and lasted on average two and a half hours. This included lunch and a period of familiarization with each other.

Data collection

We sought to maximize the period of creative thinking with the participants. We did this by using a combination of methods within a workshop setting. We began with task 1, a written task, participants were asked: ‘Imagine you have been given an infinite amount of money to spend to set up a programme to support transition. What would be the five essential elements and why?’ Individual brainstorming allowed participants to generate their own ideas, exploring their own thoughts, allowing space to possibly be freer and more creative than a group discussion. Task 2 followed, a focus group, to gather multiple perspectives in an interactive group setting, using questions/prompts developed from the literature (see Online Supplementary Material). We used well-documented techniques of focus group methodology (Stewart et al., 2007). The groups were dual moderated; one member of the research team ensured that the session progressed smoothly, while another ensured all the topics were covered. One telephone interview was carried out to accommodate a stakeholder unable to attend the workshop dates. Discussions were audio recorded with permission. The research team met after each workshop and discussed the broad themes emerging, after the third workshop it was felt that discussions were similar across all groups and so no further workshops were held.

Data analysis

Three members of the research team (FG, LR and SA) were involved in data analysis. Each researcher had been present at one or two of the workshops. Task 1 was transcribed and integrated. Qualitative content analysis (Morgan, 1993) was used for task 2 and asked two questions of the data: (1) What are the current challenges and barriers for transitioning young people? and (2) What strategies or approaches do this group of experts feel should be implemented to facilitate transition? The researchers read the transcripts independently to familiarize themselves with the data. Relevant comments were highlighted within the text and annotations were written in the margins. Highlighted comments (or summaries of the comments) were transferred onto separate post-it notes and grouped into topics. The theoretical model for the study was drawn out onto a large sheet of paper, and the post-it notes from all the transcripts were organized onto the model.

LR and SA undertook the analysis with ongoing discussions taking place between them and FG. Agreement and understanding was gauged during discussions until consensus was reached: There were in fact few discrepancies. Working in this way we safeguarded against an interpretation representing the subjectivity of the observer more than the object of study.

Ethical considerations

London South Bank University Research Ethics Committee approved this phase of our study (UREC 1156).

Results

Twenty-one experts from around the United Kingdom participated, including medical consultants, registrars, clinical nurse specialists, psychologists, occupational therapists and academic researchers. Most worked within the health service, three were employed by charities and four were university-based, although some held both clinical and academic appointments. They all had expertise in working with young people with different health conditions and disabilities (including diabetes, cystic fibrosis, cancer, mental health issues, rheumatological conditions, chronic pain and organ transplants). We aimed to bring a diverse group of people together within each workshop to probe each other’s opinions and enable rich discussion. There were at least two professionals who had published on transition, been involved in writing UK policy/guidance documents and led on practice initiatives present at each workshop.

Task 1: The ‘essential elements’ of transition were grouped into four categories (Table 1). Many of the suggestions reflected the idea that transition should be more young person focused with staff trained to respond to young people’s needs. There were several suggestions around the use of technology to provide information for young people, such as apps, websites and ‘hand-held electronic patient records in young person-friendly speak’.

Task 2: Findings from task 2 are presented using the key elements of the sequential transition model (While et al., 2004) with explanatory quotes from our data.

Table 1.

Summary of findings from task 1.

Essential elements of a programme to support transition	Why?
Developmentally appropriate programme of care
Young person focused	Need to be reflective of development level
Structured and planned to ensure patients and parents are prepared for the transition	Young people’s aspirations at should be at centre of service
Support for parents/carers Adolescent-friendly staff Peer supported Dedicated impatient/outpatient facilities Transition suites in children and adult hospitals ‘Transition camps’ ‘Transition Apps’	Respect and recognition of users as key focus of any service To support young people’s move towards independence To plan proactively for adult status and avoid current ‘slippage’ Young people like to feel comfortable Young people need flexibility Provide opportunity to discuss and work through relevant issues away from the medical setting Use of technology is appropriate for age group
Fully supported, resourced and coordinated transition programmes
Service user involvement in all aspects of design and delivery	Dedicated, funded services need to support young people and families
Patient and family steering groups Websites which are fully accessible to all Sufficient staff at paediatric and adult centres Continuity of clinicians Clearly defined age limits to transition Multi-agency Clear role responsibilities across health and social care sectors	Young people involved in design of services from the beginning Information available to young people and families at all points Need for improved assessment and feedback mechanisms Health, education and social care working together – avoid duplication of assessments – appointment planning Ensure sign-up of all agencies
Multidisciplinary team skilled in working with young people
Staff trained in age appropriate and illness specific issues Dedicated transition champions in paediatric and adult care Good communication – including flexibility Adolescent consultant. Post-adolescence as specialism Keyworker/specialist coordinator to support the transition Continuity of personnel Training for all staff working with young people, including external agencies Rolling programme of continuing professional developments for teams	Young people like to be seen by experts Opportunities for informal networking to support each other Avoidance of role ambiguity, role conflict and confusion Uniformity – link for young person and family and a link to adult services Clarity of purpose and expectations for all To improve communication between teams To remove some of the distinctions with child and adult training
Organizational components
Commissioning to include evaluation of young people’s/families’ experiences as a required quality standard Mandatory/incentivized within organizations Ongoing research and development Funding for setting up service and sustainability	Transition often seen as a low priority – needs to change Competing priorities makes it difficult to get professional’s buy in To identity best practice models and continue development To evaluate what works ‘on the ground’ in the standard NHS setting

Note: NHS: National Health Service.

Connecting structures

Good connection or continuity between services relied upon several elements. Central to this overarching theme were relationships between services, attitudes of professionals and their understanding about adolescence, transition and young people’s needs. Training for professionals was particularly highlighted as important in overcoming some of the barriers described.

Child to adult services: ‘Lack of joined-up thinking’

Discussions focused on relations between services; the importance of engagement and collaboration. Regardless of speciality, it was suggested that teams needed to work together to prepare young people for moving on. However, many spoke about the lack of cohesiveness between child and adult teams. They relayed difficulties encountered when trying to implement transition in their organizations. Lack of incentive, ownership and time were highlighted. Professional resistance was also mentioned:

We quite often have professionals who don’t necessarily feel they can trust their adult colleagues to look after their patient, as they would want them to be looked after. (Transcript 1)

The different culture of adult services was highlighted, suggesting that many organizations could not cater for adolescents: There should be a move to have young people-friendly services in both child and adult services:

There was a patient who was 17 who had a transient ischaemic attack…I tried to get her into the adolescent ward but there was a strict 17 cut off. She was 17 and a few days and so had to go and ‘bunk’ up with 80 years olds – how petrifying is that? (Transcript 2)

There was also the problem that in some organisations, there was not an equivalent adult service, particularly for young people with complex needs.

Organizational barriers to transition: ‘The actual practicalities are challenging’

Cost, feasibility and sustainability were themes that ran throughout the groups. Professionals described a big gap between the philosophy of care that most people aspire to and say is reasonable, to then implementing it and having the resources and knowledge base to do it:

The practicalities of fitting it in to day-to-day clinical life, but generally there is a lot of willingness to do it, but the actual practicalities are challenging. (Transcript 2)

Timing of transfer varied between services and was constrained by hospital policy but was generally around age 16 to 18. There was a consensus that ‘rules’ imposed on when transfer should happen were unhelpful: The move should be made when a young person is ready:

…moving from child-centred to adult-orientated services is our problem in terms of healthcare providers, we make it much harder because we have these wretched rules and different Trusts and different organisations and set these artificial limits. (Transcript 1)

Professionals’ views and attitudes: ‘It’s about changing the mindset’

The general lack of understanding about transition was highlighted and the inappropriate use of the terminology surrounding transition was discussed at length: There was consensus that confusion remains about the difference between transition and transfer.

The attitudes of professionals towards young people was highlighted as a major barrier to transition:

There is a lot of ambivalence towards teenagers in the healthcare setting and it is these attitudes that need to be addressed and challenged. (Transcript 3)

Training: ‘Understanding the needs of young people is still a huge training area’

The importance of training in adolescent healthcare and the need for inclusion in all curricular was highlighted. Core skills training in adolescent healthcare would help shift current professional attitudes towards adolescents and mean professionals could offer more rounded support:

We know who children are, we think, we know what constitutes adults don’t we? What about the bit in the middle?…We don’t know how to talk about adolescence, and it’s problem saturated, and it’s not well defined, and we’re frightened of it. (Transcript 3)

There was consensus that the rearrangement of health careers may impact on patient care; the shift towards separate child and adult specialities and age-structured nurse education/training will mean that professionals do not have the breadth of information to bring in knowledge learnt from elsewhere. Some spoke about ‘blue-sky thinking’ and how they would like to go back to the Royal Colleges and the Government and rip up the idea of being child or adult trained. They spoke positively about how in the United States there is a push to have child, adolescent and adult physicians.

Transitional service: A ‘customized’ approach

In each group, the elements of what constitutes a ‘good’ transitional service were discussed. Firstly, a personalized approach was necessary:

…for some patients it’s educational, knowing about their condition. Some people it’s more focusing on getting their prescriptions right or their social circumstances looked after with benefits or housing. (Transcript 2)

This also involved providing developmentally appropriate care. In order to meet young peoples’ needs, creativity and flexibility were viewed as important, such as using methods of communication young people may prefer (texting/email) and involving the general practitioner (GP) to avoid the young person travelling to hospital. Offering choice to young people was mentioned, for example, the choice about being seen on their own. Even if parents are present, the focus should be on the young person.

A major role of the transitional service involved preparing young people for the move. The transitional service was seen as providing ‘a journey’ (Transcript 2), a gradual, ‘drip-fed’ (Transcript 1) approach. Without adequate preparation, the transfer could fail and young people may drop out of services. Professionals mentioned methods they use, including providing the opportunity to meet the adult team before the move, having an informal meeting with a nurse from the adult team, the adult consultant seeing the young person prior to the move, showing young people photographs of the adult team, having someone from the child team accompany the young person for their first appointment and having ‘orientation’ visits with young people moving to adult services around the same time. The team members involved in providing the transitional service were discussed – ideally a multidisciplinary team should be involved. It was recognized that young people want the service to be ‘lead by experts’ (Transcript 1). Giving young people the choice about who oversees their health was mentioned, this may not need to be someone within adult services, for some young people their, ‘GP may be the best person’ (Transcript 1). Key workers were considered as useful to help continuity, communication and problem-solving; however, funding for key workers was rarely available.

The ideal space for transition clinics was discussed; clinical spaces (inpatient and outpatient) should be appropriate for young people and running clinics outside the hospital setting was seen as desirable. The general consensus was that it should not matter what service and setting young people are seen in, whether it is child/adult/adolescent focused, the most important thing is that the young person’s and family’s needs are met.

A number of barriers to providing a ‘good’ transitional service were discussed: Young people not wanting to engage with services, parental resistance to the transfer, the practicalities of fitting transition into everyday clinical work and the lack of evidence base for transitional care.

Personal growth and development: Preparation for the ‘adult world’

Participants spoke about ‘skilling up’ (Transcript 1) young people in preparation for not only the move to adult services but also for ‘adolescence’ and the adult world in general:

It’s preparing them…through the developmental milestones of adolescence so that they are entering adulthood well-equipped…The adult world as well as the adult clinic or the adult service or whatever. (Transcript 4)

Essential skills to do this included: self-management skills relating to their health condition, independence, assertiveness, being able to find information for themselves and negotiating skills. They wanted to give young people a chance to practice these skills, start early ‘in a protected environment’ (Transcript 1).

The importance of recognizing that young people have different needs was discussed; professionals need to get to know them to find out what those needs are and what they feel comfortable with. They spoke about using screening tools and annual reviews/plans to identify needs and show change in skills and knowledge. Ultimately, they thought that transitional care should be focused on enabling young people to achieve independence, live a healthy life and participate fully in the world.

Role of the parent/carer: ‘Not forgetting the parent’

Stakeholders spoke about how parents may be overlooked in the transition process and it is important to spend time with them, involve them and address their needs:

do as much planning and preparation for the parents as there is for the young person. It needs to be a simultaneous process for both. (Transcript 2)

They recognized that transition can be difficult for parents; they may be hesitant to step back as they have been the young person’s voice for so long. Parents need to be supported to change their role; this should be gradual and started early:

…actually reframing the message…finding ways that parents can empower and help support…their child, to become more independent, more self-advocating, so that it’s seen as a very positive thing, as opposed to a letting go. (Transcript 1)

Demonstrating to parents that their child is becoming more competent to take responsibility for their own health was mentioned as a strategy to help parents feel more comfortable to take a step back.

Transitional care: ‘Things have become stuck’

Participants spoke at length about the large number of policy documents and good practice statements produced concerning transition, and the lack of impact they have had on the provision of care:

Things have become stuck, but I think that’s because it’s really difficult to go from bench or journal, to bedside: there is some evidence about how we think young people want us to help them manage their transition…but what hasn’t happened is that there isn’t the evidence that transferring that research-based programme into standard NHS practice, is either possible, feasible, or sustainable. (Transcript 3)

There was a sense that much of the information was too vague and did not help solve the problem of how to implement transitional care; research was thought not to have moved on and the evidence base was minimal.

Some identified that lack of implementation may be related to the fact that there is no penalty if Trusts do not have a transition programme in place and that maybe this should be considered. There was also some suggestion about the need for a shift in the linguistics of transition and how it should instead be about providing good adolescent care:

If we ask a young person what transition means, they haven’t got a clue because transition is a professional term – ask them what growing up is like, that’s different, and that’s more real to them. (Transcript 4)

Discussion

Professionals known to be at the forefront of leading transitional services in the United Kingdom generously shared their views on the current position and took the opportunity to ‘imagine’ what a future model of care might look like to better meet the ongoing needs of young people. There was a general consensus that ‘things have become stuck’, and that more work needed to be done. Despite there being a consistent stream of policy documents over the last decade, changes to services have not taken place on the scale we might have imagined. So although much of what has been described here is not new, such as the need for individualized and tailored transitional packages of care, and the challenges/barriers that prevent those packages being universally available; there is however a contribution to make to the ongoing debate.

Our data both reinforce and support the recommendations of the CQC report (CQC, 2014). In summary, we agree that if followed, the guidance already available ‘would significantly improve the quality of care during transition’ (p. 68) and that ‘everybody seems to want to do the right thing, but there seems to be a missing link’ (p. 10). We propose here some suggestions on what those ‘missing links’ might be from expert accounts from task 2, and offer some reflections to inform the continued direction of travel and change from task 1, that so many key policy documents refer to but are yet to be reflected consistently in practice (Colver et al., 2018).

‘Lack of joined-up thinking’ and organizational constraints have been repeatedly highlighted as a particular challenge. We heard about professionals championing services, often ‘going it alone’ to provide seamless transitional care to their population. There was concern about this not being enough, where local providers were squeezing their resources, and being creative in shaping their own service: concerns about sustainability and equitable access were raised. Since 2008, it has been recognized that service redesign needs to be underpinned by effective commissioning of transition health services (Department of Health, 2008). It was suggested that, ‘professionals, managers and commissioners need to work together to design, commission and implement accessible and effective services to assure young people and families of the provision of coordinated, uninterrupted healthcare’ (Department of Health, 2008: 25). Effective commissioning, we would argue is a significant link, an example of a connecting structure that could offer: timely preparation started within child services, actively managed and coordinated transfers between child and adolescent and adult services and continuous developmentally appropriate support from adult services (Kolehmainen et al., 2017). This process has since begun, with a model specification developed for child and adolescent mental health services (NHS England, 2015). What change this brings is too early to say, but its ‘non-mandatory’ status might not have gone far enough for our experts; they spoke about the low priority of transition, suggesting compulsory change, incentives and penalties as a way forward.

The importance of education and training was highlighted. There was a shared view on a lack of understanding of young people’s needs and how to best meet these, particularly within adult care. When combined with a disregard for the importance of good transition, the end result may be that young people do not engage with adult services, with detrimental effects. We would argue that mandatory core skills training on providing developmentally appropriate care for young people and the importance of ‘good’ transition is required for all health professionals who work with young people. In particular, someone to take responsibility for a young person’s transition was deemed to be important, a ‘key worker’ or coordinator, as described by Noyes et al. (2014) and White et al. (2017). However, again this raised funding issues, where these roles might be based within children’s services and are not picked up adequately when a young person transfers to adult care; the young person needs to be supported until they are ‘established’ within the adult setting (Kelly, 2014).

There also needs to be some flexibility, taking into account a young person’s readiness and health status, recognizing that, ‘one size does not fit all’. High satisfaction with transition has been associated with care that is ‘holistic’ and youth-friendly (Shaw et al., 2014). Discussion around the key components of a transition programme reflected those outlined in the NICE guidance (NICE, 2016a). These include support before and after transfer; a preparation and education programme for young people and parents; and links to other services to meet broader needs (e.g. primary and social care). The existence of a transition policy is important but again this needs to be developed in collaboration with young people, parents and professionals who deliver transition. Quality assurance of transition programmes is crucial, it has previously been reported that clinics claim to provide transitional care, but in reality fail to meet national guidelines (Shaw et al., 2014).

Strengths and limitations

Findings reported here represent the views of a limited number of experts who self-selected to participate. However, discussions were very similar across all three workshops and one interview, suggesting some consensus on the current challenges around transition. The discussions also resonated with issues reported in the literature. One strength of our study is that participants from many different professional backgrounds, based within different services from across the United Kingdom were included.

Relevance to practice

Taken together, these findings reinforce the perception that although much has been done, there remains a significant amount of work still to do. There is clearly a shared understanding about what is needed in practice; what services need to provide to deliver transitional care. There are many excellent examples from local initiatives that can help to inform those either at the beginning or at the stage of refining their service. Both barriers and levers of change are reported here, presenting to readers real examples that can be reflected upon as relevant or not relevant to their own service.

It is too soon to determine whether the publication of NICE guidance on transition (NICE, 2016a) will influence changes in practice when previous transition guidance failed to do so. However, there is an increasing amount of information available to help practitioners achieve seamless transition; for example, practical guidance, position statements and pathways (Betz, 2017; Noyes et al., 2014; Suris and Akre, 2015), resources (e.g. Ready Steady Go (Nagra et al., 2015)), and now the benchmarks (available via www.transitionstudy.co.uk): informed by the expert opinion reported here, combined with evidence from young people, parents, health professionals and policy (Aldiss et al., 2015, 2016). The benchmarks (Table 2) offer a straightforward, practical ‘tool’ for services to measure themselves against to see how they are doing; we would suggest that they could help services begin to identify and close some of the missing links and provide a platform to share successful practice initiatives, with the ultimate goal of improving and individualizing transitional care.

Table 2.

Factors from the benchmarks for transition from child to adult health services.

Factor	Best practice
Factor 1: Moving to manage a health condition as an adult.	Young people are offered advice and information in a clear and concise manner about how to manage their health condition as an adult.
Factor 2: Support for gradual transition	The young person as they progress through the transition process is gradually prepared and provided with personally understandable information and support.
Factor 3: Coordinated child and adult teams	The young person is supported through a smooth transition by knowledgeable and coordinated child and adult teams.
Factor 4: Services ‘young people-friendly’	Young people are provided with care and in an environment that recognizes and respects that they are a ‘young person’, not a child or adult.
Factor 5: Written documentation	Concise, consistent and clear written document containing all relevant information about the young person’s transition is provided to the teams involved in the transition process.
Factor 6: Parents	Parents are included in the transition process gradually transferring responsibility for health to the young person.
Factor 7: Assessment of ‘readiness’	The young person’s readiness for transition to adult care is assessed.
Factor 8: Involvement of the GP	The young person’s GP is informed of the plan for transition and is able to liaise with other relevant teams to facilitate services requested/needed by the young person.

Note: GP: general practitioner.

Conclusion

There remains marked variability in transitional care (CQC, 2014) and in spite of the commitment shown by those engaged in this study and the large amount of guidance that is available, it is clear that there is still much to be done to improve transition within the United Kingdom and elsewhere. In our study, stakeholders were consistent in what they described as still needing to be done. We need better-tailored approaches to transition to bridge the ‘care-gap’ between child and adult services that dominates the literature; evaluation of interventions that teach life skills and self-management; strategies to improve collaboration between services; a shared understanding of approaches to care; evaluation of different models of transitional care; and finally, we need to know more from the populations we care for about their experiences of services in order to deliver a life course approach to care.

Supplemental Material

Supplementary_Material - Gathering expert opinion to inform benchmarks to support transitional care

Supplementary_Material for Gathering expert opinion to inform benchmarks to support transitional care by Susie Aldiss, Laura Rose, Dominic McCutcheon, Hilary Cass, Judith Ellis, and Faith Gibson in Journal of Child Health Care

Footnotes

Authors’ note

Ethics approval for the study required that the audio files and transcription of the interviews be kept securely, accessible only by the authors. We have supplied the focus group schedule as supplementary material.

Acknowledgements

The authors would like to thank all the experts who took part in this data collection.

Declaration of Conflicting Interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This project was funded by the Burdett Trust for Nursing.

ORCID iD

Susie Aldiss

Judith Ellis

Supplemental material

Supplemental material for this article is available online.

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