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Building consensus on transition of transplant patients from paediatric to adult healthcare
  1. Nicholas Webb1,
  2. Paul Harden2,
  3. Clive Lewis3,
  4. Sarah Tizzard4,
  5. Grainne Walsh5,
  6. Jo Wray6,
  7. Alan Watson7
  1. 1Royal Manchester Children's Hospital, Manchester, UK
  2. 2Churchill Hospital, Oxford, UK
  3. 3Papworth Hospital NHS Trust, Cambridge, UK
  4. 4Paediatric Liver Centre, Kings College Hospital NHS Trust, London, UK
  5. 5Evelina Children's Hospital, London, UK
  6. 6Great Ormond Street Hospital for Children NHS Trust, London, UK
  7. 7Nottingham University Hospitals, Nottingham, UK
  1. Correspondence to Nicholas Webb, Royal Manchester Children's Hospital, Manchester M13 9WL, UK; nicholas.webb{at}cmft.nhs.uk

Abstract

Objective Despite improvements in recent years at many centres, there remains an overall lack of consistency in the healthcare and support services provided to young people during their transition from paediatric to adult transplant units. Concerns that such deficiencies may be causally related to subsequent graft loss through patient non-concordance have prompted calls for the delivery of a more patient-centred service. To address these issues, representatives from major transplantation centres in the UK (cardiac, hepatic, renal) and across all disciplines were brought together to produce a series of consensus statements specifying key actions needed to improve the quality and consistency of transition healthcare.

Design Participants at the meeting included transplant physicians and surgeons from both adult and paediatric centres, allied health professionals (nurse specialists, psychologists, psychosocial support workers, transplant coordinators, youth workers), as well as young or adolescent transplant patients, their parents/carers and representatives of various support groups concerned with the young transitioning patient. The meeting consisted of presentations, group discussions (plenary and breakout) and a final discussion led by the seven participants who comprised the consensus panel.

Results Seven consensus statements emerged from the meeting, which are strongly representative of the current opinion of families and the UK transplant community.

Conclusions The actions they specify may therefore be seen as recommendations for timely and wide adoption, and as guidelines for best practice.

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Introduction

Transition has been defined as ‘the purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adult-orientated healthcare systems’.1 A young transplant patient's ‘transition’ should first be distinguished from their actual ‘transfer’, which occurs on a specified date or over a shorter, limited time-period. The Department of Health (DH) document entitled ‘Transition: getting it right for young people’2 was an important milestone in efforts to establish good practice in transition services among healthcare professions and other agencies. It provided a plan for the development of services, and best practice guidance on the provision of the skills/knowledge required by professionals. It also addressed issues in relation to different models of transition, specialty-specific issues and young people in special circumstances (box 1).

Box 1 Transition: getting it right for young people—suggestions for action

  • Senior leads for children and young people should be aware of the need for improvement and organisational policies for transition, as part of the National Service Framework

  • Children's and adult health services should agree the best way of measuring effectiveness of transitions arrangements, and whether agreed policies and protocols are being implemented

  • Medical consequences for young people on making the transition to adult health services would benefit from specific clinical audits

  • The Academy of Medical Royal Colleges and other bodies should encourage member colleges to ensure transition planning and services for young people are part of their agenda for setting quality standards and for continuing professional development

  • The Royal College of Nursing, Nursing Midwifery Council and professional bodies allied to medicine need to ensure this is part of their professional training and development

  • As many of the issues about adolescent healthcare and transition are generic, a shared care training resource should be developed, which could be at least partly web based

  • Voluntary organisations should encourage the parents and young people who make up their membership to gather examples of good and unsatisfactory practice and disseminate these

  • The NHS Research and Development programme and other research funding organisations should encourage and support a research agenda in adolescent health and transition

  • Partnership working with Youth and Connexions services could be further developed

What is already known on this topic

  • Despite recent improvements, there remains an overall lack of consistency in the healthcare and support services provided to young people during their transition from paediatric to adult transplant units.

  • These deficiencies may be causally related to adverse outcomes, including acute rejection and graft loss though patient non-concordance.

  • There have been multiple calls for the delivery of a more patient-centred service.

What this study adds

  • Through the participation of transplant professionals, young or adolescent transplant patients, their parents/carers, and representatives of various support groups concerned with the young transitioning patient, the specific objective of this meeting was to formulate a series of concise, robust consensus statements that encapsulate the key actions needed to bring about changes in the current delivery of service.

  • Seven consensus statements emerged from the meeting which are strongly representative of the current opinions of families and the UK transplant community.

Nevertheless, current practices with regard to patients transitioning from paediatric to adult transplant units vary widely across the UK. There is no consistently applied standard of best practice for the targeted healthcare of such patients during this critical phase of their treatment. There is evidence that a significant proportion of graft loss in renal transplant patients occurs in the young/adolescent patient age group.3 It is possible that this is related, among other factors, to the loss of elements of psychosocial support as the patient is transferred to the adult care system and to other factors that are possibly related to shortcomings in support care for transition patients.2 4,,9 It has been shown, for example, that clinic attendance rates are improved if the paediatric patient is able to meet the adult transplant unit team before transferring, and that patients show improved resilience if a good network of friends and other support is established.10

There is increasing recognition that patients receiving transplants at a young age, and therefore requiring continuing healthcare management throughout the time of adolescence, represent a group with special requirements, particularly with regard to the critical paediatric–adult transition phase.10 Improvements in service delivery that address the current inconsistencies and shortcomings in existing practice would therefore be timely, and should be made a priority.

In view of the need to improve care for transitioning patients in a consistent manner, it is important to establish a clear consensus among the broad UK transplant community about the key actions needed for improving existing services. Logic would suggest that a ‘seamless’ clinic, with ongoing care from both paediatric and adult healthcare professionals, as appropriate, would be the best model for transition care. However, there is no clear evidence to support this, nor to indicate that the alternative models—either dedicated adult follow-up with no direct input or continuity from paediatric services, or lifelong paediatric follow-up—might be inferior. While acknowledging that different approaches are needed for different conditions and their prevalence, the DH guidance document2 emphasised that collaboration between children's and adult services is of crucial importance for successful transition planning and programmes. A ‘coordinated’ transition protocol that is age-appropriate, developmentally appropriate and comprehensive11 12 is clearly a desired aim.

As part of an ongoing programme of activities, GIFT—The Children's Transplant Charity—began an initiative to establish a consensus among the UK transplant community on the key actions needed for optimising the delivery of a patient-centred service for transitioning patients. This paper reports on the outcomes of the consensus discussions that took place as a result of this initiative. It lists the series of key consensus statements that were developed from a multi-professional meeting, and which are being proposed for endorsement and widespread adoption in the UK, and which may act as guidelines to inform any future modification of services. Note that the term ‘young person—here abbreviated as ‘YP’ for brevity—has been used throughout in preference to ‘adolescent’, which is less favoured by patients themselves.

Methods

A 1-day meeting was convened on 13 February 2009 at the Royal College of Physicians, London, UK, and was attended by over 70 invited participants who, collectively, were representative of major transplantation centres in the England and Wales and committed enthusiasts for ensuring effective, high quality transition. The multidisciplinary group included professionals from both paediatric and adult centres (cardiac, hepatic, renal) and across all disciplines—nurse specialists, paediatricians, pharmacists, psychologists, psychosocial support workers, specialist transplant physicians, surgeons, transplant coordinators and youth workers. Patients themselves, representatives from patient support groups, parents/carers and other concerned parties also attended and actively participated in the discussions (see Participators for a list of principal meeting participants—that is, speakers and members of the consensus discussion panel).

All 25 UK transplant centres were invited, 21 of which attended on the day. Paediatric professionals were asked to inform their adult practitioner colleagues about the meeting and were given an electronic flyer to forward on. The meeting was therefore open to those with an interest in attending and was widely publicised throughout the transplantation community. Some participants attended through word of mouth information.

The patients and parents who attended were mainly selected by nurse contacts from the units. Nurses were asked to select patients who had varied experiences of the transition phase to give a balanced view.

Structure and objectives of the GIFT initiative and transition consensus meeting

The broad aim of the GIFT initiative underpinning the meeting was to enable the views to be heard of all those involved in the critical paediatric–adult transition phase of transplant patients, and discuss how to optimise patient outcomes and thereby define a collective aspiration for the delivery of an ideal service. The specific objective of the meeting was to formulate, from these wide-ranging discussions, a series of concise, robust consensus statements that encapsulate the key actions needed to bring about changes in the current delivery of service.

Representatives from major transplantation centres in the UK—cardiac, hepatic, renal—were involved in the discussions, and particular reference was made to:

  • Development of National Guidance for Paediatric and Adult Renal Units (Renal Association/British Association for Paediatric Nephrology).

  • Transplant patient care plans currently in operation in Great Ormond Street Hospital, London; King's College Hospital, London; Papworth Hospital, Cambridge; and Freeman Hospital, Newcastle upon Tyne.

  • Development of DH guidelines for commissioners on adult congenital heart disease and grown-up congenital heart disease.

  • The innovative, integrated or collaborative approaches to transition care for transplant patients that have been established at various institutions (eg, Addenbrooke's Hospital, Birmingham Children's Hospital, Freeman Hospital, Great Ormond Street Hospital, Guy's Hospital, King's College Hospital, Nottingham University Hospitals, Papworth Hospital, Royal Free Hospital, Royal London Hospital, Royal Manchester Children's Hospital).

The meeting consisted of presentations, group discussions (plenary and breakout) and a final discussion of the seven participants who comprised the consensus panel (see box 2 and participants).

Box 2 Meeting structure

The panel incorporated all the findings from the day's discussions and synthesised a series of specific, action-oriented statements, with input from the full assembly, and with ratification of the broad general phrasing used to embody the concepts.

Results: meeting outcomes

Critical factors in optimising transition process

Much progress has been made in the UK over the last 10–12 years in generally improving the transition phase for young patients. However, these improvements need to be continued and spread further throughout the UK so that there is greater consistency in service provision across both paediatric and adult units to bridge the ‘gap’ that currently exists between them, with regard to the different practices employed. In short, a generally applicable standard of best practice is lacking.

The transition process—from four key perspectives

The key points raised with regard to the transition process from the different viewpoints explored are summarised in box 3.

Box 3 Key points raised about the transition process from four perspectives

Young person/patient perspective

  • Parent-free consultations should be gradually introduced, to fulfil the need to gain independence from parents; clinicians must be aware they will ultimately need to consult primarily the patient, rather than the parent

  • Education and preparation should result in the YP having a better understanding of their condition and the medical terminology (which may previously have been regarded mainly as the parent/carer's prerogative)

  • Doctors should be given appropriate training in communicating with YPs, and that transfer to the adult unit should ideally occur with other young people whom they know

  • Trust should be established between the YP and their new adult unit multidisciplinary team, and this can be greatly assisted by having a dedicated youth worker or equivalent, who can provide the support needed for the transition

  • The provision of recreational activities, such as transition camps, etc, where trust can be built up with the new adult unit, is seen as an effective means of providing the requisite ‘safe’ environment for YPs; such initiatives allow patients to interact and network with other patients, which can also help greatly in the transition process

  • Giving YPs greater knowledge of the adult unit's procedures, in order that they are aware of how this may be expected to differ from the paediatric unit (eg, in their use of local rather than general anaesthetic in angiography) is important

  • The YP should be able to exercise some degree of choice about how they want to proceed with their transition, particularly in enabling them to choose which centre they want to attend, where alternative options exist

Parent/carer perspective

  • Opportunities for patients and their parents/carers to become familiar with the YP's ‘new’ adult MDT and its practices should be provided

  • A greater understanding and sensitivity is needed on part of the medical team, including a greater awareness of and regard for parents' needs—for instance, to tailor services, wherever possible, to individual patients

  • The age at which a YP transfers to the adult unit should be flexible, rather than circumscribed, and the process should be gradual, so that parents/carers have a ‘run-in’ to familiarise themselves with new staff, procedures, etc; this would avoid an abrupt cessation of contact with the paediatric team, which can be traumatic for carers who will usually have built up a long-term relationship with the paediatric MDT over many years

  • Activities for parents and a parent ‘buddying’ approach are effective ways of enabling mutual support, and are particularly applicable for the social (ie, non-medical) aspects involved in transplantation patient care

  • Acknowledgement of the individuality of patients and their situations is essential: a sympathetic, family-oriented point of contact is needed in the adult unit as well as the paediatric one

  • Mechanisms enabling mutual support, supervision and confidentiality are essential in order to help parents gain and build confidence, and can be achieved through various means, such as enabling greater access to ‘transition coordinators’ or to general practitioners' time or increasing the opportunities for parents of patients to meet other parents wherever possible

  • The financial hardships and social restrictions often encountered by parents/carers following the YP's transition are also important considerations; loss of disability allowances; increased prescription charges; increased travel, accommodation and car parking costs; and more restricted visiting hours associated with attending adult transplant units can have a major impact on patients'/carers' lives, and the MDT should be aware of these potentially significant constraining factors

MDT perspective: adult unit

  • The need to provide continuity of care presents the major challenge as there should be a coordinated approach to the YP's care by the MDTs of both units

  • While a ‘seamless’ transition is clearly the ideal outcome, its achievement may be problematical, though not unfeasible, in practice; in most cases there must be some management of patients' expectations to allow for this and YPs themselves should accept that a degree of responsibility on their part is also needed to assist in achieving a smooth transition process

  • There may sometimes be a need to educate parents/carers to ‘let go’—to relinquish their role of principal responsibility for the patient—which requires tact and a sympathetic approach

  • Deficiencies in educating patients and parents/carers, as well as their friends, about the importance of concordance with medication need to be addressed

  • It is essential to ensure that healthcare staff are adequately trained and sufficiently competent to deal with patients of this young age group

  • The first clinic with the YP should be consultant-led and the patient should already have met the person involved, to develop familiarity. The perceived competence of the clinician at this first appointment is vital, such that trust is established between the YP and the adult centre from the start

  • Streamlining the transition process, with improvements through a single, key point of contact—acting as a ‘champion’ of the patient—is a recommended approach

  • The establishment of a YP's clinic or its equivalent, with a focus on the transitioning patients, is a positive step towards establishing the framework for an effective service. Any such clinic should include those patients who may have had their transplants in the adult centre, but who may never have had specific, age group-related support

  • The transition planning should be easily adaptable, with sufficient flexibility for tailoring to individual's needs—for example, in cases where a patient has expressed no need for a detailed transition plan

  • The composition of the adult MDT should be examined with a view to possibly extending it (with appropriate funding) to include, for example, the role of a psychologist or other healthcare professional; introducing a ‘buddying’ system and generally increasing the time available for patients to spend in clinics can also help improve the overall process

  • Any increased expenditure on improving transition service provision should ideally be shown to be justifiable on the basis of its ultimate cost-saving (eg, if medication non-adherence is improved as a result, with consequent reduction of graft loss, potentially high costs of later retreatment can be averted)

MDT perspective: paediatric unit

  • Many viewpoints of the adult MDT were echoed by the paediatric MDT, especially with regard to the importance of a key ‘champion’ for the patient

  • The key role of the patient ‘champion’ should extend across both units, with a correspondingly appropriate job title applicable to both

  • The process of managing the expectations of patients and carers should be started early

  • The education of all involved—healthcare staff, parents/carers, families as well as patients—is considered a key element in preparing for the transition process, which should be as consistent as possible

  • Any disparity in practice between adult and paediatric units should be resolved and not result in a gap in service provision; to resolve this issue may require a formalisation of procedural standards for the transition process, which would be applicable to all healthcare trusts

  • Guidelines on standards of care and best practice would be expected to resolve much of the overall current lack of consistency, but it must be acknowledged that the complexity of introducing a standard, consistent, trust-wide service could require a large investment of resources

  • Greater involvement of general practitioners and primary care trusts in the transition process—perhaps with them having a more central role—should possibly be considered

MDT, multidisciplinary team; YP, young person.

Consensus development

Initial consensus on broad themes

In the initial broader discussion, an unequivocal consensus was reached on three general statements:

  • Nobody should be transferred to adult units without having discussed a transition plan.

  • There should be a clinical lead for transition in each paediatric unit/hospital.

  • There should be a clinical lead for transition in each adult unit/hospital.

Participants' responses to the following three other proposed statements were equivocal, mixed or associated with specifically voiced reservations:

  • All patients should have been transferred to the adult centres by the time they are 18 years old. No clear consensus reached; the view was generally expressed that patient age specifications should be flexible, rather than circumscribed, to accommodate individual cases.

  • An effective transition support team should include support from specifically defined roles, which should include a psychologist, specialist nurse and a youth worker. No clear consensus reached: views were mixed on which of the roles specified should be considered essential or generally applicable to the composition of the multidisciplinary teams (MDTs) of all transplant units.

  • In the adult clinic, parents should be excluded from the consultation. No clear consensus reached: most were in disagreement, but views were mixed, and several participants pointed out specific circumstances where this ruling would be inappropriate, and therefore unnecessarily rigid in practice.

Development of specific consensus statements

The following seven key statements of consensus on transition were finally ratified by the consensus discussion group panel. These statements should be collectively viewed as the basis of a best-practice framework that should be adopted at the earliest opportunity.

Statement 1

A formal, national framework for enabling the seamless transition of transplant patients from paediatric to adult services should be defined, towards which all healthcare service providers should work.

Statement 2

The age of transfer of a patient from paediatric to adult services depends upon the individual's circumstances and is usually after completing growth and development (particularly educational). Transfer takes place during a transition process that spans an age range of 14–24 years.

Statement 3

Every transplant recipient should be offered the opportunity of participating in a ‘young adult’ clinic of their choice up to the age of 24 years.

Statement 4

Each paediatric unit, and similarly each adult unit, should identify a clinical lead who will have the key role of collaborating to establish an agreed transition service/process and enabling the MDT from both units to work together to ensure the process of transition is optimal for each patient.

Statement 5

The development and establishment of the transition service should include a process of consultation with patients, parents and their families, to ensure that the transition service provision meets the needs of all.

Statement 6

Young adults undergoing transfer during the transition process should have access to some form of support service tailored to their needs in the adult unit, ideally in the form of one or more ‘young adult support workers’.

Statement 7

A set of performance standards for operating a transition service should be established, against which the Care Quality Commission is able to assess the performance of individual NHS trusts, for the purpose of ensuring that the defined standards are being met and, where they are not, that appropriate measures are in place to address poor performance.

Discussion and conclusion

The meeting was able to achieve a robust consensus on a series of key actions needed to improve the transition process, defined by the statements given above.

A key point was that each unit/centre should have in place the equivalent of a transition plan document. The plan should include competencies that need to be achieved by the young adult before transfer and/or a checklist of critical tasks that need to be achieved at different ages throughout childhood and adolescence prior to transfer.12 13 Preparation for transfer to the adult unit could also be enhanced by utilising peer support and the experience of those who have already transferred in a transition residential experience.14

The transition plan could also consider a job description or training element for the transition co-ordinator or equivalent, if this is identified as a key role. Although there may be logistical difficulties (eg, geographical) in defining or implementing a generic plan that is applicable to all units, the aspirational need for a consistent standard is justified.

There should always be scope for tailoring the transition process according to the patient's individual needs. It is not necessary (nor appropriate) to stipulate a fixed age for the transfer of patients, but the age-range of 14–24 years—into which most patients will fall—should serve as a guide. The minimum age at which transition should actively commence is 14 years. The first appointment at the adult centre is a critical one and there should be a preparatory phase to ensure that there is a gradual introduction of the young person to the adult unit and its staff. This approach also allows some patient choice—in offering the option for some patients to decline this offer or for them to choose a specific (eg, local) centre, if available. The position of the designated clinical lead at the paediatric unit does not need to be specified—this role could well be filled by, for example, a nurse specialist, senior transplant nurse, etc—provided there is sufficient recognition of their authority. The designated person should have the specific task of identifying and collaborating with a suitable counterpart at the adult unit.

The group recognised that a consultation with the patient's family should be considered standard practice in healthcare provision generally.

The patient's ‘champion’ should focus on supporting the patient's smooth transition by addressing the variety of issues (ie, psychosocial, financial, general) that typically accompany the process of the young person's transition. The group recognised that the young adult support services currently in place are under-resourced, particularly in adult units, but also that there are centres where this role is being fulfilled by various people in the multiprofessional team (eg, nurse practitioners, doctors, patient support workers). Similarly, it was also acknowledged that different transplant units (ie, kidney, liver, heart, heart-lung) can vary greatly, in terms of their number, infrastructure, numbers of patients and geographical spread, but that the consensus statement should be applicable generally to all, rather than be subdivided to accommodate any of these differences.

Bell et al reported on a conference that was held in order to develop recommendations for transition from paediatric to adult units primarily in renal transplantation. No patients or carers were involved in this consensus meeting.6 This current initiative is a step further along from the Bell recommendations because of the multidisciplinary nature of the attendees; by engaging healthcare professionals from adult and paediatric units with nurse specialists, psychologists, psychosocial support workers, transplant coordinators, youth workers along with patients and parents this has provided a more balanced view of the current state of transition in transplantation in the UK.

The participants of this initiative have no national remit, and any adoption of these recommendations will be at the discretion of individual trusts, as there is no national budget to facilitate this process. Bell et al acknowledge the high cost of such an implementation; however, this is justified on the basis that costs will ultimately be saved through a reduction in the number of graft losses.6

While this was an essentially qualitative exercise, the authors believe that the robust structure of the consensus meeting and the broad stakeholder representation produced outcomes that are worthy of consideration for national guidance. It is recognised, however, that wider validation of the consensus statements, and modification to take account of local factors, may be necessary for maximum adoption.

References

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Footnotes

  • Ms Paula Banda, northern coordinator, GUCH Patients Associationa; Mr Adam Briggs, transplant patienta; Ms Julie Flett, paediatric transplant liaison sister, Cardiothoracic Transplant Unit, Freeman Hospital, Newcastle upon Tynea; Ms Naomi Ford, parent of transplant patienta; Dr Paul Harden, consultant nephrologist, Churchill Hospital, Oxfordb; Ms Mary Jewels, adult transplant outpatient sister, Cardiothoracic Transplant Unit, Freeman Hospital, Newcastle upon Tynea; Dr Clive Lewis, consultant cardiologist and transplant physician, Papworth Hospital NHS Trust, Cambridgeb; Dr Stephen Marks, consultant paediatric nephrologist, Great Ormond Street Hospital for Children and UCL ICH, Londona; Dr David Milford, consultant nephrologist, Birmingham Children's Hospitala; Dr Amy McNaughton, clinical psychologist, Cardiothoracic Transplant Unit, Freeman Hospital, Newcastle upon Tynea; Dr Donal O’Donoghue, national clinical director for kidney services, Department of Healtha; Mr Nicholas Orwin, transplant patienta; Ms Vashti Poole, GIFTa; Dr Marianne Samyn, consultant paediatric hepatologist, King's College Hospital, Londona; Ms Sarah Tizzard clinical nurse specialist, Paediatric Liver Centre, King's College Hospital, Londonb; Ms Grainne Walsh, paediatric transplant clinical nurse specialist, Evelina Children's Hospital, Londonb; Professor Alan Watson (Co-Chair), consultant paediatric nephrologist, Nottingham University Hospitalsb; Dr Nicholas Webb (Co-Chair), consultant paediatric nephrologist, Royal Manchester Children's Hospitalb; Dr Jo Wray, health psychologist, Great Ormond Street Hospital for Children NHS Trust, Londonb

  • a speaker;

  • b consensus discussion panel.

  • Funding The consensus meeting was supported by an educational grant from Astellas Pharma and coordinated by GIFT, the children's transplant charity.

  • Competing interests None.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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