Introduction The transition between paediatric and adult care for young people with chronic illness or disability is often poorly managed, with adverse consequences for health. Although many agree that adolescent services need to be improved, there is little empirical data on which policies can be based.
Objectives To systematically review the evidence of effectiveness of transitional care programmes in young people aged 11–25 with chronic illness (physical or mental) or disability, and identify their successful components.
Design A systematic literature review in July 2010 of studies which consistently evaluated health outcomes following transition programmes, either by comparison with a control group or by measurement pre-intervention and post-intervention.
Results 10 studies met the inclusion criteria, six of which showed statistically significant improvements in outcomes. Descriptive analysis identified three broad categories of intervention, directed at: the patient (educational programmes, skills training); staffing (named transition co-ordinators, joint clinics run by paediatric and adult physicians); and service delivery (separate young adult clinics, out of hours phone support, enhanced follow-up). The conditions involved varied (eg, cystic fibrosis, diabetes mellitus), and outcome measures varied accordingly. All six interventions that resulted in significant improvements were in studies of patients with diabetes mellitus, with glycosylated haemoglobin level, acute and chronic complications, and rates of follow-up and screening used as outcome measures.
Conclusions The most commonly used strategies in successful programmes were patient education and specific transition clinics (either jointly staffed by paediatric and adult physicians or dedicated young adult clinics within adult services). It is not clear how generalisable these successful studies in diabetes mellitus will be to other conditions.
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There are increasing numbers of children with chronic health needs or complex disabilities. However the transition between paediatric and adult care for such young people is often poorly managed, with consequences in adolescence and adult life. Adverse effects have been reported on health (worsening of glycaemic control in those with diabetes mellitus,1 graft failure in transplant recipients2) and health service use (increased loss to follow-up, with poor health outcomes in some cases, for survivors of paediatric cancers3 and cardiac surgery4). Qualitative research with young adults has confirmed that many experience the transfer to adult care as disjointed, and find it difficult to adjust to their increased responsibility for their own care when using adult services.5,–,7 Calls for improved transitional care have come from the American Academy of Pediatrics,8 English Department of Health9 10 and Royal College of Physicians of Edinburgh,11 as well as subspecialty groups for cystic fibrosis,12 spina bifida,13 inflammatory bowel disease14 and mental health problems15 among others.
What is already known on this topic
▶ The transition to adult services can result in poor health indicators and loss to follow-up for adolescents with chronic disease.
▶ Transition is now recognised as a key component of care, across the spectrum of physical and mental illness and disability, though there has been little high quality evaluation published.
What this study adds
▶ Most studies evaluating transitional care have been for patients with diabetes mellitus, with programmes targeted at improving patient education, staff continuity or service delivery.
▶ Existing evidence supports the use of educational programmes, joint paediatric/adult clinics and specific young adult clinics.
Despite this, Sir Ian Kennedy's recent review of Children's Health Services in the UK16 reports that transition, ‘long the cause of complaint and unhappiness’, is a ‘critical area’ for service improvement, as existing abrupt transfers are failing to meet young people's needs. He called for discrete funding for this area, and a shift in focus towards the needs of the young person and away from ‘bureaucratic barriers’ between paediatric and adult care. A recent consensus statement by clinicians, patients and families on transition for survivors of paediatric transplantation17 highlighted exisiting inconsistencies and recommended changes to standardise service delivery. The most effective way to achieve a smooth transition has become a subject of considerable debate, as whatever solution is adopted will require a comprehensive programme that reflects and encourages the patient's physical, psychological and social development, rather than merely providing a physical transfer from paediatric to adult care.
A range of approaches to improving the processes and structure of transitional care has been proposed18 19 but it is not yet clear how effective these may be in improving health outcomes and there is wide variation in provision both geographically and according to condition. Previous literature reviews have been limited in that they identified predominantly descriptive articles, highlighting the issues surrounding transition and programme development.20,–,22 This paper systematically reviews the evidence of the effectiveness of transitional care interventions in improving health outcomes in a broad range of conditions (any chronic physical or mental illness or disability), in order to identify key features on which clinicians can base future services and research.
A systematic literature search was conducted in July 2010, which aimed to identify studies that evaluated health outcomes following one or more interventions in the period of transition between paediatric and adult services for children with chronic disease, mental illness or disability. Studies were only included if (1) they involved a health service intervention during the period of transition from paediatric to adult care, (2) they evaluated changes in health outcomes following this transfer, and (3) outcomes were compared either between an intervention and control group or pre-intervention and post-intervention in a single group. A wide age range was included (11–25 years) to allow for the considerable variation in the age of transfer to adult care as, for example, those with learning disabilities often remain under paediatric care into young adulthood. Studies were excluded if they addressed only educational or vocational service transitions and outcomes, rather than health, despite the recognised importance of a holistic approach.
A search was conducted using MEDLINE, HMIC, PsycINFO and Embase, which identified 1998 unduplicated papers. The search strategy combined four series of terms related to: paediatric and adult populations; continuity of healthcare/transition; indicators of evaluation; chronic illnesses and disabilities (general and specific). A preliminary literature search had identified some chronic conditions about which there was existing literature concerning problems in transition (including diabetes mellitus, juvenile idiopathic arthritis and cystic fibrosis) and terms specifically related to these were incorporated into the search strategy. Papers with an English title and abstract published in any language were considered. Abstracts were screened by one reviewer and rejected if it was clear that the article did not report an evaluation of transitional care or inclusion criteria were not met. The full text was obtained for 34 papers of which nine met the inclusion criteria. Use of the search strategy in CINAHL and IBSS yielded 451 items of which four met the inclusion criteria, including one not identified by the Medline search. A search of grey literature identified a number of policy/guidance documents, but no new primary research meriting inclusion. We followed the Cochrane handbook23 guidance supporting the use of a systematic, narrative approach when meta-analysis is inappropriate, and synthesised results by thematic analysis.
The search revealed 10 studies evaluating interventions in the transition between paediatric and adult care, with marked heterogeneity of populations, interventions and outcome measures, which were analysed to identify common themes of study design, intervention and outcome.
The studies varied in terms of overall study design, in the number and age range of participants, and the durations of intervention and follow-up. Eight studies attempted comparison between an intervention group and controls,24,–,31 although in only four cases was a standard intervention versus control design used. In the other four studies the methods used were: retrospective analysis of outcomes from centres with differing arrangements for transition, with the district where adolescents were transferred directly to routine adult care as a control28 31; use of population data from a recent multicentre study as the control, making the conclusions drawn less robust27; comparison of outcomes for those who had undertaken a certain number of steps of a transition programme prior to transfer, with those who completed fewer steps functioning as control.29 Two studies did not use any comparison group, but measured outcomes of a single group of patients pre-transfer and post-transfer.32 33 Eight studies included patients at different stages of adolescence (within the range 16–20 years) at transfer, indicating flexibility in the boundaries between paediatric and adult services. Two studies transferred patients at 18 years. Little information was given on how age of transfer for individual patients was decided, nor was there subgroup analysis for different age groups within studies. Eight studies examined services for patients with diabetes mellitus, one for cystic fibrosis and one for organ transplant recipients. Most studies focused around the event of transfer, rather than the overall transition process, which should begin with preparation early in adolescence.
The studies reported a range of interventions and the common elements identified are summarised in table 1. We classified interventions according to whether they were primarily focused on the patient, the staff or on improving service provision/access. Interventions targeted at patients were educational programmes and improved self-management; staffing interventions focused on named transition co-ordinators or joint clinics run by paediatric and adult physicians; and changes to service delivery were separate young adult clinics, out of hours phone support and enhanced follow-up.
The studies focused on health outcomes, rather than outcomes reflecting the holistic definition of transition as a ‘process which addresses the medical, psychosocial and vocational issues as young people move from child to adult centred services’.34 The measures of health outcome used were appropriate for the diverse conditions studied. The majority of studies measured disease specific biochemical indicators, such as HbA1c or creatinine, and/or health service use, such as percentage of missed follow-up appointments. Biochemical markers such as HbA1c are intermediate indicators of quality of care and are relatively easily measured; however it is arguable whether using such measurements over relatively brief periods (generally only 12 months) is a valid indicator of long term health benefits. More robust outcome measures included hospital admissions for diabetic ketoacidosis or prevalence of diabetic complications (nephropathy, retinopathy, hypoglycaemia). None, however, involved long-term follow-up of morbidity or mortality.
Six studies, all involving diabetes mellitus, showed a statistically significant difference (p<0.05 or less) in health outcome following the intervention (table 2); in some cases the difference was significant for only one of several outcomes measured (table 3). Of these, two compared parameters pre-intervention and post-intervention, one retrospective study compared an intervention group with recent multicentre study figures, and the largest study identified (1507 patients) analysed results from centres with differing arrangements for transition in place. Of the two controlled studies, one demonstrated statistically significant improvement in the intervention group's HbA1c, both in comparison to their baseline (p<0.01) and to the control group (p<0.05 at 1 year) and better clinic attendance rates. Interestingly, 3 years later, HbA1c was similar in both groups, calling into question the programme's long-term impact. The second controlled study demonstrated mixed results: a statistically significant improvement in glycaemic control only for those with poorest diabetic control (one third of the total) and a significantly lower rate of hypertension (p=0.03) but not diabetic ketoacidosis or microalbuminuria.
This review aimed to systematically appraise all available studies that evaluated transitional care programmes in order to identify which are the key features associated with success. Three previous reviews have examined evidence on services managing the transition between paediatric and adult care. A 2004 review highlighted the paucity of robust evaluation of transitional care programmes, with only three methodologically sound evaluative studies identified.20 The authors proposed models of care for further study, but could not offer empirical evidence to support them. A 2008 review of transitional care for diabetes mellitus21 identified some existing strategies, but found predominantly descriptive rather than evaluative studies. A review of transition literature for young people with disabilities22 identified five previous reviews; however, none identified an evidence base on which health (rather than educational or vocational) programmes could be based. These findings may partly explain why, even now, a fifth of paediatric diabetic services in the UK offer no transition service.35
The current review is limited by the poor methodological quality of the studies. Two studies compared a single group of patients pre-transition and post-transition, and compared this with previous observations (such as the reported trend of increasing HbA1c during transition in adolescents with diabetes) rather than directly comparing intervention and control groups. In studies with a control group, sample sizes were generally small (50–100 participants). No studies attempted a randomised design. However, as has recently been noted, research on this topic is methodologically challenging, with the majority of studies being descriptive and lacking in details of the service or any objective evaluation.36
Analysis of the included studies was complicated by the multiple interventions delivered together without separate evaluation of different components and widely differing definitions and duration of interventions. The only intervention evaluated in isolation was the provision of joint paediatric/adult clinics in two studies (one successful, one unsuccessful). Analysis is further complicated by the fact that roles were poorly defined and interventions poorly specified. The duration of intervention also varied from a one-off event to a package of measures lasting more than 3 years. However, even this may be considered too short; a 3-year programme might cover only one period of adolescent development, rather than the more prolonged period of support in preparation for, during and after transfer, which has been proposed as good practice, albeit on the basis of limited evidence.37
The heterogeneity of interventions, conditions and outcomes makes it very difficult to directly compare studies, but there is clear evidence from four studies in diabetes mellitus supporting disease specific education, which in two cases incorporated patient self-management skills (eg, self-adjustment of insulin dose and carbohydrate counting clearly integrate elements of both). Five out of six successful programmes involved either specific young adult clinics or joint paediatric/adult clinics. While three of the four studies involving a specific young adult clinic within adult services resulted in improved outcomes, only three of the eight studies involving joint clinics between paediatric and adult physicians did. However, the latter strategy produced improved outcomes in by far the largest study identified (1507 patients) and qualitative research has leant support to the concept of creating an ‘overlap’ clinic with staff from paediatric and adult services, with many young people wanting to meet their adult physician while still under paediatric care.38,–,40 Only one study involved out of hours phone support, which was successful as part of a multi-component intervention. Three studies involved transition co-ordinators and three enhanced follow-up, including two successful studies in each group, suggesting both warrant further evaluation.
Future research priorities
A key question remains how sustainable the observed changes may be. None of the studies considered long term health outcomes, which should be a future research priority, especially to evaluate whether interventions during adolescence alter adult health behaviour and outcomes. In certain conditions a link between short and long term outcomes is clear (eg, between glycaemic control and diabetic complications; or between loss to follow-up and adverse events in survivors of corrected congenital heart disease).4 The impact of adolescent experiences on long term outcomes for disabilities or arthritis is less clear, with more empirical data needed to establish the effectiveness and cost-effectiveness of interventions.
A further question is whether it is possible to identify which patients are most in need of, or likely to benefit from, enhanced transition support. Two studies of diabetic patients25 32 showed greater gains from the transition programme in the subgroup of patients with the highest pre-transition HbA1c, at least in the short term, which may indicate the presence of other problems. However, it can be argued that the transition to adult healthcare is one of the key elements of adolescent healthcare,41 and should therefore be incorporated into the coordinated management of all young people with a chronic condition rather than being targeted to any specific group.
Although the search strategy included all chronic physical and mental conditions and disabilities, it was striking that the only condition for which any evaluated transition programme achieved successful outcomes was diabetes mellitus. Even within diabetes services, the included studies represent only a proportion of existing service models: a recent review of UK transition arrangements for diabetes identified widely varying practices across seven different domains of continuity, the majority of which had not been rigorously evaluated.42 It is also difficult to extrapolate from diabetes to more complex areas of service provision, for example, in attention deficit hyperactivity disorder a major challenge comes from adult services being comparatively poorly developed,43 and managing transition for those with complex neurodisability requires comprehensive interagency co-ordination. Further research is also needed to determine the age-range at which transfer should take place, or if it should be a flexible process adapted to individual needs. A large study of adult survivors of congenital heart disease in Canada reported an increased probability of successful transfer to adult care if the last paediatric clinic occurred at a later age.44 However, research should take advantage of new tools to assess transition readiness (as measured by self-management and advocacy skills, rather than chronological age) to determine when a young person may be ready to transfer.45 46
Potential avenues for research are also highlighted by related strategies to improve concordance during adolescence, highlighting the value of viewing transition as a process spanning adolescence. The use of text messaging to improve communication47 or a negotiated telephone support system to improve self-management48 is being evaluated for adolescents with diabetes, prior to transfer. A comprehensive package of interventions (including individualised transition plans and education) has resulted in improved Health-Related Quality of Life scores for adolescents with juvenile idiopathic arthritis within paediatric care; it remains to be seen what impact this will have after the transfer to adult services.49 Some established approaches to service development and evaluation in adult medicine may have particular relevance during the transition period. For example, the use of individual care co-ordinators/case managers (analogous to those in adult cancer services)50 has long been proposed for young people with complex healthcare needs.51 The Expert Patient Programme52 has been adapted to encourage young people with chronic conditions to facilitate workshops and share experiences with others in the ‘Staying Positive’ programme.53
Overall, the evidence from this review identifies patient education programmes and joint paediatric/adult clinics or specific young adult clinics as services that can improve outcomes following transition to adult care in patients with diabetes. The comparative benefit of different components of these complex interventions is not yet clear, and some successful programmes also incorporated enhanced follow-up, out of hours phone support and a transition co-ordinator role. It remains to be seen whether the transitional care interventions shown to be helpful in diabetes mellitus can be applied to services for other conditions. There remains much that could be done to improve the evaluation of existing programmes and those in development, across the spectrum of chronic illness and disability. Demonstrating effectiveness of services is especially important during the current economic climate when cost-savings are being demanded throughout the health service.
Funding KL's research is funded by the National Institute for Health Research
Competing interests None.
Provenance and peer review Not commissioned; externally peer reviewed.