- Research article
- Open Open Peer Review
A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions
BMC Medicinevolume 16, Article number: 111 (2018)
Most evidence about what works in transitional care comes from small studies in single clinical specialties. We tested the hypothesis that exposures to nine recommended features of transitional healthcare were associated with better outcomes for young people with long-term conditions during transition from child-centred to adult-oriented health services.
This is a longitudinal, observational cohort study in UK secondary care including 374 young people, aged 14–18.9 years at recruitment, with type 1 diabetes (n = 150), cerebral palsy (n = 106) or autism spectrum disorder with an associated mental health problem (n = 118). All were pre-transfer and without significant learning disability. We approached all young people attending five paediatric diabetes centres, all young people with autism spectrum disorder attending four mental health centres, and randomly selected young people from two population-based cerebral palsy registers. Participants received four home research visits, 1 year apart and 274 participants (73%) completed follow-up.
Outcome measures were Warwick Edinburgh Mental Wellbeing Scale, Mind the Gap Scale (satisfaction with services), Rotterdam Transition Profile (Participation) and Autonomy in Appointments.
Exposure to recommended features was 61% for ‘coordinated team’, 53% for ‘age-banded clinic’, 48% for ‘holistic life-skills training’, 42% for ‘promotion of health self-efficacy’, 40% for ‘meeting the adult team before transfer’, 34% for ‘appropriate parent involvement’ and less than 30% for ‘written transition plan’, ‘key worker’ and ‘transition manager for clinical team’.
Three features were strongly associated with improved outcomes. (1) ‘Appropriate parent involvement’, example association with Wellbeing (b = 4.5, 95% CI 2.0–7.0, p = 0.001); (2) ‘Promotion of health self-efficacy’, example association with Satisfaction with Services (b = − 0.5, 95% CI – 0.9 to – 0.2, p = 0.006); (3) ‘Meeting the adult team before transfer’, example associations with Participation (arranging services and aids) (odds ratio 5.2, 95% CI 2.1–12.8, p < 0.001) and with Autonomy in Appointments (average 1.7 points higher, 95% CI 0.8–2.6, p < 0.001).
There was slightly less recruitment of participants from areas with greater socioeconomic deprivation, though not with respect to family composition.
Three features of transitional care were associated with improved outcomes. Results are likely to be generalisable because participants had three very different conditions, attending services at many UK sites. Results are relevant for clinicians as well as for commissioners and managers of health services. The challenge of introducing these three features across child and adult healthcare services, and the effects of doing so, should be assessed.
Young people with long-term conditions have a physical, mental or health impairment with the potential for a substantial and long-term adverse effect on their everyday lives . Adolescence and young adulthood is a key developmental stage, extending into the mid-twenties, during which a young person experiences many developmental transitions such as leaving school, gaining training, employment or further education, forming romantic relationships and potentially leaving home. Simultaneously, the healthcare of young people with a long-term health condition ‘transfers’ from child to adult health services, with the expectation that young people take increasing responsibility for managing their health condition. Many young people with long-term health conditions have poor health and social outcomes following transition [2, 3]. The importance of healthcare transition and its challenges are recognised in the 2016 UK National Institute for Health and Clinical Excellence (NICE) Guideline 43  and Quality Standard 140 . ‘Transition’ is the purposeful, planned process that addresses the medical, psychosocial and educational/vocational needs of adolescents and young adults with long-term conditions as they move from child-centred to adult-oriented healthcare systems . ‘Transfer’ is the formal event when the healthcare of a young person moves from children’s services to adults’ services.
The international research literature proposes service features that might promote better healthcare transition, both at national level [7, 8] and specialty level . However, there is a lack of evidence about whether these ‘proposed beneficial features’ improve outcomes . A systematic review  highlighted some evidence, mainly from diabetic services, and concluded that the most encouraging interventions were those oriented to patients (educational programmes and skills training), staffing (transition co-ordinators), and service delivery (young adult clinics or enhanced follow-up). The recent evidence overview, provided by NICE Guideline 43 , set out 9 overarching principles and 47 recommendations but recognised it could cite relatively little high-quality evidence to support them or to prioritise them.
Recommendations for particular service features should be supported by robust evidence that indicate improved outcomes across a range of conditions and settings before they are adopted into practice. With this challenge in mind, we designed our research to enable us to examine patient-level outcomes that would be applicable across a range of conditions. We focused on nine proposed beneficial features (PBFs, see Methods). The aim of this longitudinal, observational study was to test the hypothesis that exposure to these PBFs is associated with better outcomes for young people with long-term conditions, namely satisfaction with services, mental wellbeing, participation and autonomy in appointments.
The study recruited 374 young people from across England and Northern Ireland, on the basis of having one of three conditions – 150 young people with type 1 diabetes mellitus (exemplar of chronic health condition with national standards of care, recruited through five NHS Trusts); 118 young people with autism spectrum disorder (ASD) and additional mental health problems (exemplar of neurodevelopmental disorder, recruited through four NHS Trusts); and 106 young people with cerebral palsy (CP) (exemplar of complex physical disability, recruited through two regional population registers and one NHS Trust). Young people were aged 14 to 18.9 years at recruitment, did not have significant learning disability, and had not transferred to adult healthcare. For each young person, a parent or carer was also invited to participate.
Recruitment was between June 2012 and October 2013. Local researchers visited the young people and parents, usually at home, took informed consent and administered independently completed questionnaires. Visits were arranged annually for 3 years. The local researchers attended joint training each year, and participated in group telephone discussions at around 3-month intervals to maintain consistency of approach. To maximise young person engagement and retention, outcome measures could be completed by post or electronically. At the baseline visit, the nature of the PBFs was discussed with the young person and a log-book was provided. Before each subsequent annual visit, the researcher consulted the young person’s medical records to seek evidence of the PBFs having been provided (for example, inclusion of a member of the adult service at a paediatric appointment). Then, at the visit, the researcher and young person completed a summary sheet recording whether each PBF had been experienced or not in the previous year; the information gathered from medical notes acting as additional prompts for the discussion.
Definition of the nine PBFs is provided in Box 1. ‘Appropriate parent involvement’ represents the perceptions of both the young person and parent being satisfied with level of parent involvement. These were chosen on the basis of being recommended in recent guidance , identified as beneficial in a systematic review [11, 14], and following our own analysis of individual studies (Table two in Colver et al. ).
We chose measures of satisfaction with services, mental wellbeing, participation and autonomy in appointments. They were chosen to be relevant across conditions and settings and correspond to measures subsequently proposed in international Delphi studies [15, 16]. In particular, we included a measure of mental wellbeing which captures what the young person feels about their life, as recommended by an International, Interdisciplinary Health Care Transition Research Consortium [15, 17]. The measure of participation reflects the importance that the International Classification of Functioning, Disability and Health  attaches to social as well as health outcomes.
Satisfaction with services was assessed using Mind the Gap . This scale measures the difference or ‘gap’ between a young person’s ideal service and the service they have received (thus higher scores indicate lower satisfaction). Service satisfaction is expressed as a total score, with subdomain scores for Management of the environment, Provider characteristics and Process issues.
Mental wellbeing was assessed using the Warwick Edinburgh Mental Wellbeing Scale . This 14-item questionnaire collects responses to each item on a 5-point Likert scale (‘none of the time’ 1 to ‘all of the time’ 5). Higher scores (range 14–70) denote higher mental wellbeing.
Participation was measured by the Rotterdam Transition Profile . This captures independence in participation across nine domains. Independence is categorised into three ‘phases’, phase 1 being the least independent (thus higher scores indicate higher participation). A further participation measure, not in the original protocol, was added on the advice of the Programme’s External Advisory Board. This was Autonomy in Appointments, involving three questions about whether the young person makes their own appointments and asks and answers questions themselves (range 3–15) . Higher scores indicate greater autonomy.
Baseline demographic information, including age, sex, index of multiple deprivation (IMD)  calculated from postcode in England, and the multiple deprivation measure  in Northern Ireland, and a number of socioeconomic indicators, including family composition, was collected for those who participated in the study.
‘Date of transfer’ was defined as the date of the last appointment with a paediatrician or adolescent psychiatrist. The young person’s status at each visit was recorded as still in a children’s service, transferred to dedicated adult service, transferred to General Practitioner in primary care, or lost to follow-up.
In order to maximise useable questionnaire data, the ‘final visit’ was defined as visit 4, or as visit 3 if visit 4 did not take place or questionnaire data were missing.
Data analysis and statistical methods
Age, Satisfaction with services (total and per domain), Mental wellbeing, and Autonomy in appointments were treated as continuous variables. Condition, site, sex, participation and exposure to PBFs were treated as categorical variables. Missing data were handled according to the suggested rules for each outcome measure. In the regression analyses, those with missing data for PBFs (year-by-year and consolidated PBF indicator) were grouped together and included in the modelling.
Representativeness between young people who were retained to final visit and those lost to follow-up, by age, sex, condition, site and socioeconomic status, was assessed using t, Mann–Whitney and χ2 tests as appropriate. The Kruskal–Wallis test was used to examine associations between outcome measures and condition. Comparisons of outcome measures between baseline and final visit were tested using Wilcoxon paired sign-rank and χ2 tests.
Two approaches to analysis were undertaken to assess the association of PBFs with outcomes across the duration of follow-up. The first approach used the young person’s experience of each PBF during the previous year (i.e. whether the PBF was present (yes) or absent (no) during that year) and tested this against each outcome at the end of that year. Hence, analyses were conducted ‘year-by-year’ and each was a cross-sectional analysis. The time between baseline (visit 1) and visit 2 was called ‘Period’ 1; similarly for periods 2 and 3.
The second approach used the young person’s experience of each PBF throughout the 3 years of the study. This was a longitudinal analysis. It was not appropriate to model the exposure to PBFs by simple frequencies, as young people had varying numbers of contacts with clinicians; in some years, a young person experienced a PBF and the next year might not. Also there was variation in the times at which the PBFs were captured; although intended to be every year, appointments often fell 1 or 2 months either side for practical reasons. We therefore developed a consolidated indicator to estimate the extent to which each PBF was delivered over the duration of the study. The indicator was based on whether the PBF had been experienced or not in each follow-up period. It was defined to be ‘optimal’ or ‘sub-optimal’ for each PBF, based on the following criteria developed by consensus within the members of the research team:
Group one optimal: for ‘age-banded clinic’, ‘meet adult team before transfer’, ‘written transition plan’, ‘holistic life-skills training’ and ‘transition manager for clinical team’; evidence that the PBF was experienced or recorded in the 12 months before at least one of the research visits 2, 3 and 4 over the 3 years.
Group two optimal: for ‘key worker’ and ‘coordinated team’; the PBF should have been experienced in the 12 months before at least two of the research visits 2, 3 and 4 over the 3 years.
Group three optimal: for ‘promotion of health self-efficacy’ and ‘appropriate parent involvement’; the PBF should have been experienced in the 12 months before all research visits 2, 3 and 4 over the 3 years.
For both approaches, linear or logistic regression modelling was used, depending on the nature of the outcome variable, to test for association between each PBF individually or each consolidated PBF indicator and outcomes. All models were adjusted for age, sex, condition and potential for clustering by site.
Significant associations (p < 0.05) from these models were further adjusted for transfer status, time since transfer to final visit (if applicable) and time to first adult appointment (if applicable).
A significance threshold of p ≤ 0.01 was used in final models to mitigate multiple testing (but associations at p ≤ 0.05 are presented as supporting evidence). Data were analysed using STATA version 14.
Throughout the 5 years of the Transition Research Programme, a young persons’ advisory group (UP) met each month. All group members had long-term health conditions. The group provided advice on outcome measures, recruitment and data collection, and interpretation of findings. Details of UP’s activities are on the Programme’s website: http://research.ncl.ac.uk/transition/.
To support recruitment and retention during the study, all participants and referring clinicians received regular newsletters (approximately every 9 months) about the progress of the study. Feedback of the results at the end of the study to participants took place in two ways, (1) through displaying results of the research on the website, and (2) a summary of the results was included in the final newsletter sent to every participant who wanted to continue to receive information about the study.
A total of 374 young people were recruited to the study (150 for diabetes, 106 for CP, 118 for ASD), mean age 16.2 years (standard deviation (SD) 1.3), along with 369 parents/carers. Demographic data are summarised in Additional file 1: Table S1. As previously reported , participants did not differ significantly from non-participants by age or sex. Overall, participants had significantly (p < 0.001) lower socioeconomic status scores (i.e. less deprived) than non-participants; however, the difference in overall IMD score on a continuous scale ranging from 0.5 to 87.8, was only 6.1. Further, the proportion of single parent families with dependent children in the UK Annual Families and Households Survey 2013  was 25.1%, very similar to the proportion in our sample at 23.7% (Additional file 1: Table S1).
A total of 304 (81.3%) young people remained in the study by visit 2, 259 (69.3%) by visit 3 and 274 (73%) by final visit (235 from visit 4 and 39 from visit 3, see Methods). Of these 274 young people, 58% were male and there were 112 with diabetes, 74 with CP and 88 with ASD. The mean time between baseline visit and final visit was 2.9 years (SD 0.4, range 1.8–3.9).
There were no significant differences between those remaining in the study and those not remaining with respect to sex (p = 0.6), age (p = 0.6), condition (p = 0.6), diabetes sites (p = 0.4) or ASD sites (p = 0.6). However, in Northern Ireland, those with CP lost to follow-up came from areas with, on average, greater socioeconomic deprivation (p = 0.03). Examining socioeconomic factors based on actual circumstances rather than area of residence, there was a significant reduction in the proportion of families with single parents (Additional file 1: Table S1).
Of the 100 participants not remaining in the study, one had died, 28 were lost to follow-up and 71 withdrew. Of those withdrawing, 22 said they were no longer interested, 19 had other commitments, 19 experienced personal issues such as major injuries or severe parental illness, and the remainder gave miscellaneous reasons.
The mean age at final visit was 19.1 years (SD 1.4, range 16.1–22.0). Of the 274 participants at final visit, 49 (18%) remained in child services and 225 (82%) had left child services. Very different proportions by condition transferred to primary care (General Practice) as compared to a dedicated adult service (Table 1).
Changes in outcomes during the study
The average changes in outcomes between baseline and final visits are shown in Additional file 1: Table S2. In summary, satisfaction with services decreased overall but remained stable for those with diabetes; mental wellbeing was steady overall but was always lower for those with ASD and associated mental health problems; participation increased overall but was always higher for those with diabetes; and autonomy in appointments increased overall but was again always higher for those with diabetes.
PBFs experienced over transition
Table 2 sets out the extent to which participants experienced optimal or suboptimal exposure to PBFs across the period of the study, using the consolidated indicator. Optimal exposure to features of transitional healthcare was 61% for ‘coordinated team’, 53% for ‘age-banded clinic’, 48% for ‘holistic life-skills training’, 42% for ‘promotion of health self-efficacy’, 40% for ‘meeting the adult team before transfer’, 34% for ‘appropriate parent involvement’, and less than 30% for ‘written transition plan’, ‘key worker’ and ‘transition manager for clinical team’. Significantly more young people with diabetes experienced optimal exposure to PBFs compared to those with CP or ASD, particularly ‘meeting the adult team before transfer’ and ‘promotion of health self-efficacy’.
PBFs as predictors of Mind the Gap scores
In the year-by-year analysis, there were significant positive associations (p ≤ 0.01) during each period between ‘appropriate parental involvement’ and satisfaction with services (Mind the Gap) overall and in most domains of the instrument (Table 3). These were confirmed by significant associations of the consolidated PBF indicator with Mind the Gap at final visit.
The pattern of associations was similar for ‘promotion of health self-efficacy’ though the evidence for the association was not as strong (total Mind the Gap p = 0.04) for the influence of the consolidated PBF indicator.
PBFs as predictors of wellbeing scores
‘Appropriate parent involvement’ was associated with wellbeing (Warwick Edinburgh Mental Wellbeing Scale) in the second and third periods of the year-by-year analysis, though at a lesser level of significance (p = 0.03) for the consolidated PBF indicator.
PBFs as predictors of the Rotterdam transition profile
‘Meeting the adult team before transfer’ was significantly associated (p ≤ 0.01) with a number of domains of the Rotterdam Profile in all three periods of the year-by-year analysis and also the consolidated PBF indicator (Table 3).
A number of weaker year-by-year and consolidated PBF indicator associations with other domains of the Rotterdam Profile were seen, but they were not in the predicted direction.
PBFs as predictors of autonomy in appointments
There were significant associations (p < 0.01) of ‘meeting the adult team before transfer’ with ‘autonomy in appointments’ in periods 1 and 3 and with the consolidated PBF indicator (p = 0.02).
Thus, three PBFs of transitional healthcare had significant (p ≤ 0.01) positive associations with better outcomes, namely ‘appropriate parent involvement’, ‘promotion of health self-efficacy’ and ‘meeting the adult team before transfer’. The b-coefficients indicated changes of approximately 0.5 SDs with respect to the satisfaction with services scale (SD 1.5 in our population), wellbeing (SD 7.0 in our population) and autonomy in appointments (SD 3.0 in our population). The odds ratios indicated increased likelihoods of being in a more independent phase of transition. The other six PBFs had few statistically significant positive associations (p ≤ 0.01, Table 3) with better outcomes in the year-by-year analysis, had a number of negative associations, and had no positive associations with the consolidated indicator of exposure to PBFs.
Our study explored whether features of transitional healthcare, recommended in policy documents, were associated with positive outcomes. Three PBFs had significant positive associations with better outcomes, namely ‘appropriate parent involvement’, ‘promotion of health self-efficacy’, and ‘meeting the adult team before transfer’. The b-coefficients indicated clinically significant changes of approximately 0.5 SDs with respect to the satisfaction with services scale, wellbeing and autonomy in appointments. The odds ratios indicated increased likelihoods of being in a more independent phase of transition.
The other six PBFs had few statistically significant positive associations with better outcomes in the year-by-year analysis, had a number of negative associations and had no positive associations with the consolidated indicator of exposure to PBFs.
Two of the three key features which help (‘appropriate parent involvement’ and ‘promotion of health self-efficacy’) are not specific to transition; rather, they are features of developmentally appropriate healthcare for all young people. This finding reinforces the view that much of the essence of good transitional care is actually good developmentally appropriate healthcare [28, 29].
‘Appropriate parent involvement’ and ‘promotion of health self-efficacy’ were perceived to have been experienced satisfactorily by less than half of participants across transition across the three conditions. However, they were experienced by more young people with diabetes than by those with CP or ASD. For ‘meeting the adult team before transfer’, around two-thirds of young people with diabetes reported that they had met a member of the adult team but, for those with CP or ASD, it was less than a quarter. Thus, we found a different quality of experience of transitional healthcare for young people with a long-term illness (diabetes) compared to those with a long-term disability. These gaps in current practice need to be addressed through service development.
Strengths and weaknesses
Our study was hypothesis driven, with pre-planned outcome measures that were applicable over condition and setting. These measures examined young people’s satisfaction with services, their wellbeing and participation, rather than focusing on process indicators such as attendance or loss to follow-up. There is a place for both outcomes and process indicators in transition evaluation. However, if service features do not improve the health or well-being of the young person, then it is hard to argue on clinical effectiveness grounds any basis for their adoption regardless of how process indicators may change. Our study has reported on wellbeing and participation which have rarely been used in this area, despite recommendations to do so [15, 17, 30]. Inclusion of a sample of young people with three contrasting conditions raises confidence in the generalisability of the findings to most young people with long-term health conditions. The retention rate of 73% to final visit was a considerable strength in this age group. Our data related to clinical practice for the three very different conditions, across several geographical locations. Unlike many previous studies [31,32,33,34,35], it was not an evaluation by a local team of their local intervention, which risks observer bias and limits generalisability of findings. Further, we collected data longitudinally over 3 years of transition. One limitation was lower average recruitment from a group with a special need for transitional care, namely those from areas of greater socioeconomic deprivation. However, the difference in overall IMD score on a continuous scale ranging from 0.5 to 87.8, was only 6.1; further, there was no difference in proportion of single parent families as compared to national norms. Regarding attrition, this was more marked by IMD score only for those with CP in Northern Ireland. There was, however, a reduction in the proportion of single parent families, which could be relevant to interpreting our finding that appropriate parent involvement in transition was significantly associated with better outcomes.
There was also lower than intended recruitment from the two disability groupings, so that analyses controlling for condition may have been underpowered. A further potential limitation was the accuracy of exposure to PBFs. The local researchers were trained together each year on this topic and then held the discussion each year with the young person, supplemented by the young person’s notes and inspection of medical notes. The analysis by whether exposure to the consolidated PBF indicator had been ‘optimal’ was a more demanding interrogation of the data than the year-by-year analyses because it required there to be some degree of good practice throughout the 3 years, not just over 1 year. However, the decision rules (described in Methods) about what constitutes optimal exposure to each PBF were determined by the research team and have some subjectivity.
Strengths and weaknesses in relation to other studies
The three PBFs for which we found evidence of positive associations are supported by guidance and corroborating evidence discussed below. The link to current UK guidance (NICE) is also presented for each.
‘Appropriate parent involvement’
The NICE  guideline 43 emphasised ‘Appropriate parent involvement’ throughout its report; it is an overarching principle in section “Background”.1.1, and sections “Background”.2.19–1.2.22 focusing on the involvement of parents. Heath and Farre’s systematic review of studies of parents’ perceptions of their role in Transition  concluded that “Parents can be key facilitators of their child’s healthcare Transition, supporting them to become experts in their own condition and care. However, to do so parents require clarification on their role and support from service providers”. Akre’s study  found parental satisfaction with their involvement was associated with easier transition from the young person’s point of view. Allen’s study of young people with diabetes emphasised the importance of parents during Transition . A review of qualitative studies  and a subsequent study  identified the tension that young people experience between seeking autonomy and still needing their parents. Two further recent reports investigated the parent–young person dyad [41, 42] and reached similar conclusions to those of the current study, namely that the parent and young person need to share care but that the change to adult autonomy is dynamic and will continuously change.
‘Promotion of health self-efficacy’
In section “Background”.2.17, NICE  recommended ‘Promotion of health self-efficacy’. Sattoe and van Staa  found that “continuing attention to self-management” was associated with better health-related quality of life. There is conflicting evidence as to whether a structured approach, including motivational techniques, to increase health self-efficacy in diabetes influences glycaemic control [44, 45]. After liver transplant, higher perceived self-management competence was actually associated with poorer clinical outcomes . Mackie  showed the benefit of a 1-hour nurse-led intervention to promote knowledge and confidence about one’s condition, in this case congenital heart disease.
‘Meeting the adult team before transfer’
In sections “Background”.3.5 and 1.3.6, NICE  recommended ‘Meeting the adult team before transfer’. Our definition of meeting the adult team before transfer included clinics where adult and paediatric clinicians consulted jointly. In other studies, such joint clinics have shown improvements in certain indicators in nephrology (transplant rejection) , urology (aspects of care)  and rheumatology (knowledge of one’s condition) . Crowley’s review  found joint clinics were associated with improved outcomes in those with diabetes.
The remaining six PBFs, for which our study found little evidence of benefit, had been included because a number of small published studies suggested they might be associated with improved outcomes. ‘Having a key worker’ was recommended by NICE  (sections “Background”.2.5–1.2.10 called for a ‘Named Worker’). Sloper et al.  found strong evidence for introducing key workers. The difficulty with ‘key worker’ may be operational rather than the principle; staff changes, due to leaving post, restrictions in job plans, service restructuring, sickness or maternity leave, make it difficult to provide a consistent key worker for all young people with long-term conditions. Having access to “holistic life-skills training” was recommended by NICE (sections “Background”.2.13–1.2.15). It was associated with greater satisfaction with service providers, and with more independent participation in domestic life in the third period of the year-by-year analysis, but not in the analysis by consolidated PBF indicators. Interpretation is difficult because few services provided this type of training. ‘Having a written transition plan’ was associated with greater satisfaction with services during the second study period but was otherwise negatively associated with many outcomes. NICE  (section “Background”.3.4) recommended transition planning but did not specifically mention that it should be a written document. Data from our qualitative work  showed the potential for careful planning to mitigate some of the disruptive, disorienting consequences of transfer. However, there were conflicting views about a ‘written’ plan. Some professionals said such plans get forgotten or lost, and personal interaction was far more important. On the other hand, lack of a formal plan left many families disoriented and wondering whether services would have sufficient resources to provide for care after transfer. Having a ‘transition manager for clinical team’ had no associations in the year-by-year analysis and had largely negative associations with the consolidated PBF indicator. In pilot studies, some benefits of having such a manager were seen after liver transplant  and in rheumatology .
Which outcomes should be measured in transition studies? [52,53,54] There is a need to go beyond current Delphi studies, and crucially involve young people and their families in developing consensus. Our choice of outcomes was informed by the International Classification of Functioning  and by discussion with international transition researchers, and conformed with many of the recommendations of subsequent international surveys [15, 16]. Although carefully chosen and piloted, measures may not be ideal; for example, we found the domain Finances of the Rotterdam Transition Profile not to be sensitive to change by the end of the study, as most young people remained dependent in part on family financial support.
This study examined patient-level generic outcomes and provides new evidence about what may improve such outcomes. The findings are likely to be generalisable because participants had three very different conditions, attending services at many UK sites. Most previous studies have examined process indicators, which can be relevant to monitoring services but do not establish whether outcomes improve.
Three PBFs consistently associated with better outcomes were ‘Appropriate parent involvement’, ‘Promotion of health self-efficacy’ and ‘Meeting the adult team before transfer’. Our findings are relevant to almost all physicians and surgeons as some of their patients are likely to be adolescents and/or young adults with long-term conditions. The findings are also relevant for commissioners and managers of both child and adult health services who should prioritise changes for which there is evidence of benefit. There may need to be different approaches to different conditions as current provision of the three features is better for those with long-term conditions such as diabetes than for those with disabling conditions such as CP or ASD.
The three features should be introduced or maintained to a high standard in both child and adult services and the challenge of doing so evaluated. Such change will also require staff training and organisational change across child and adult healthcare services.
autism spectrum disorder
Index of Multiple Deprivation
National Institute for Health and Clinical Excellence
proposed beneficial feature
UK Parliament. Disability Discrimination Act. London: The Stationery Office, 2005.
Stam H, Hartman EE, Deurloo JA, Groothoff J, Grootenhuis MA. Young adult patients with a history of pediatric disease: impact on course of life and transition into adulthood. J Adolesc Health. 2006;39(1):4–13.
Gorter J, Stewart D, Woodbury-Smith M, King G, Wright M, Nguyen T, et al. Pathways toward positive psychosocial outcomes and mental health for youth with disabilities: a knowledge synthesis of developmental trajectories. Can J Commun Ment Health. 2014;33(1):45–61.
National Institute for Health and Care Excellence (NICE). Transition from Children’s to Adults’ Services for Young People Using Health or Social Care Services, Guideline 43. London: National Institute for Health and Care Excellence (NICE); 2016.
National Institute for Health and Care Excellence (NICE). Transition from Children’s to Adults’ Services. Quality standard 140. London: National Institute for Health and Care Excellence (NICE); 2016.
Blum RW, Garell D, Hodgman CH, Jorissen TW, Okinow NA, Orr DP, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. A position paper of the Society for Adolescent Medicine. J Adolesc Health. 1993;14(7):570–6.
American Academy of Pediatrics, American Academy of Family Physicians, American College of Physicians, Transitions Clinical Report Authoring Group, Cooley WC, Sagerman PJ. Supporting the health care transition from adolescence to adulthood in the medical home. Pediatrics. 2011;128(1):182–200.
Mazur A, Dembinski L, Schrier L, Hadjipanayis A, Michaud PA. European Academy of Paediatric consensus statement on successful transition from paediatric to adult care for adolescents with chronic conditions. Acta Paediatr. 2017;106(8):1354–7.
Foster HE, Minden K, Clemente D, Leon L, McDonagh JE, Kamphuis S, et al. EULAR/PReS standards and recommendations for the transitional care of young people with juvenile-onset rheumatic diseases. Ann Rheum Dis. 2017;76(4):639–46.
Campbell FBK, Aldiss SK, O’Neill PM, Clowes M, McDonagh J, While A, Gibson F. Transition of care for adolescents from paediatric services to adult health services (Review). Cochrane Database Syst Rev. 2016;4:CD009794.
Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child. 2011;96:548–53.
Colver AF, Merrick H, Deverill M, Le Couteur A, Parr J, Pearce MS, et al. Study protocol: longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health. 2013;13(1):675.
Merrick H, McConachie H, Le Couteur A, Mann K, Parr JR, Pearce MS, et al. Characteristics of young people with long term conditions close to transfer to adult health services. BMC Health Serv Res. 2015;15:435.
While A, Forbes A, Ullman R, Lewis S, Mathes L, Griffiths P. Good practices that address continuity during transition from child to adult care: synthesis of the evidence. Child Care Health Dev. 2004;30(5):439–52.
Fair C, Cuttance J, Sharma N, Maslow G, Wiener L, Betz C, et al. International and interdisciplinary identification of health care transition outcomes. JAMA Pediatr. 2016;170(3):205–11.
Suris JC, Akre C. Key elements for, and indicators of, a successful transition: an international Delphi study. J Adolesc Health. 2015;56(6):612–8.
Scal P. Improving health care transition services: just grow up, will you please. JAMA Pediatr. 2016;170(3):197–9.
World Health Organization. International Classification of Functioning, Disability and Health: Children and Youth Version. Geneva: ICF-CY; 2007.
Shaw KL, Southwood TR, McDonagh JE. Development and preliminary validation of the ‘Mind the Gap’ scale to assess satisfaction with transitional health care among adolescents with juvenile idiopathic arthritis. Child Care Health Dev. 2007;33(4):380–8.
Clarke A, Friede T, Putz R, Ashdown J, Martin S, Blake A, et al. Warwick-Edinburgh mental well-being scale (WEMWBS): validated for teenage school students in England and Scotland. A mixed methods assessment. BMC Public Health. 2011;11:487.
Donkervoort M, Wiegerink DJ, van Meeteren J, Stam HJ, Roebroeck ME. Transition to adulthood: validation of the Rotterdam transition profile for young adults with cerebral palsy and normal intelligence. Dev Med Child Neurol. 2009;51(1):53–62.
van Staa A, On Your Own Feet Research Group. Unraveling triadic communication in hospital consultations with adolescents with chronic conditions: the added value of mixed methods research. Patient Educ Couns. 2011;82:455–64.
Department for Communities and Local Government. English IMD 2010 Data. 2011; https://www.gov.uk/government/statistics/english-indices-of-deprivation-2015. Accessed June 2018.
Northern Ireland Statistics and Research Agency. Northern Ireland MDM 2010 Data. 2010; www.nisra.gov.uk/deprivation/nimdm_2010.htm. Accessed 22 Mar 2017.
Solanke F, Colver A, McConachie H. Transition Collaborative Group. Are the health needs of young people with cerebral palsy met during transition from child to adult health care? Child Care Health Dev. 2018;44(3):355–63.
Gray S, Cheetham T, McConachie H, Mann KD, Parr JR, Pearce MS, et al. A longitudinal, observational study examining the relationships of patient satisfaction with services and mental well-being to their clinical course in young people with type 1 diabetes mellitus during transition from child to adult health services. Diabet Med. 2018; https://doi.org/10.1111/dme.13698.
Office for National Statistics. Families and Households Survey. 2013; https://www.ons.gov.uk/peoplepopulationandcommunity/birthsdeathsandmarriages/families/qmis/familiesandhouseholdsqmi. Accessed 15 Apr 2018.
Farre A, Wood V, McDonagh JE, Parr JR, Reape D, Rapley T, et al. Health professionals’ and managers’ definitions of developmentally appropriate healthcare for young people: conceptual dimensions and embedded controversies. Arch Dis Child. 2016;101(7):628–33.
Toolkit for introducing Developmentally Appropriate Healthcare. 2017; https://www.northumbria.nhs.uk/quality-and-safety/clinical-trials/for-healthcare-professionals/. Accessed 15 Dec 2017.
Le Roux E, Mellerio H, Guilmin-Crepon S, Gottot S, Jacquin P, Boulkedid R, et al. Methodology used in comparative studies assessing programmes of transition from paediatrics to adult care programmes: a systematic review. BMJ Open. 2017;7(1):e012338.
Fredericks EM, Magee JC, Eder SJ, Sevecke JR, Dore-Stites D, Shieck V, et al. Quality improvement targeting adherence during the transition from a pediatric to adult liver transplant clinic. J Clin Psychol Med Settings. 2015;22(2–3):150–9.
Annunziato RA, Baisley MC, Arrato N, Barton C, Henderling F, Arnon R, et al. Strangers headed to a strange land? A pilot study of using a transition coordinator to improve transfer from pediatric to adult services. J Pediatr. 2013;163(6):1628–33.
Shalaby MS, Gibson A, Granitsiotis P, Conn G, Cascio S. Assessment of the introduction of an adolescent transition urology clinic using a validated questionnaire. J Pediatr Urol. 2015;11(2):89 e1–5.
Harden PN, Walsh G, Bandler N, Bradley S, Lonsdale D, Taylor J, et al. Bridging the gap: an integrated paediatric to adult clinical service for young adults with kidney failure. BMJ. 2012;344:e3718.
Huang JS, Terrones L, Tompane T, Dillon L, Pian M, Gottschalk M, et al. Preparing adolescents with chronic disease for transition to adult care: a technology program. Pediatrics. 2014;133(6):e1639–46.
Heath G, Farre A, Shaw K. Parenting a child with chronic illness as they transition into adulthood: a systematic review and thematic synthesis of parents’ experiences. Patient Educ Couns. 2017;100(1):76–92.
Suris JC, Larbre JP, Hofer M, Hauschild M, Barrense-Dias Y, Berchtold A, et al. Transition from paediatric to adult care: what makes it easier for parents? Child Care Health Dev. 2017;43(1):152–5.
Allen D, Channon S, Lowes L, Atwell C, Lane C. Behind the scenes: the changing roles of parents in the transition from child to adult diabetes service. Diabet Med. 2011;28(8):994–1000.
Lugasi T, Achille M, Stevenson M. Patients’ perspective on factors that facilitate transition from child-centered to adult-centered health care: a theory integrated metasummary of quantitative and qualitative studies. J Adolesc Health. 2011;48(5):429–40.
Pierce JS, Aroian K, Schifano E, Milkes A, Schwindt T, Gannon A, et al. Health care transition for young adults with type 1 diabetes: stakeholder engagement for defining optimal outcomes. J Pediatr Psychol. 2017;42(9):970–82.
Hanna KM, Dashiff CJ, Stump TE, Weaver MT. Parent-adolescent dyads: association of parental autonomy support and parent-adolescent shared diabetes care responsibility. Child Care Health Dev. 2013;39(5):695–702.
Nguyen T, Henderson D, Stewart D, Hlyva O, Punthakee Z, Gorter JW. You never transition alone! Exploring the experiences of youth with chronic health conditions, parents and healthcare providers on self-management. Child Care Health Dev. 2016;42(4):464–72.
Sattoe JN, Bal MI, Roelofs PD, Bal R, Miedema HS, van Staa A. Self-management interventions for young people with chronic conditions: a systematic overview. Patient Educ Couns. 2015;98(6):704–15.
Channon SJ, Huws-Thomas MV, Rollnick S, Hood K, Cannings-John RL, Rogers C, et al. A multicenter randomized controlled trial of motivational interviewing in teenagers with diabetes. Diabetes Care. 2007;30(6):1390–5.
Christie D, Thompson R, Sawtell M, Allen E, Cairns J, Smith F, et al. Structured, intensive education maximising engagement, motivation and long-term change for children and young people with diabetes: a cluster randomised controlled trial with integral process and economic evaluation - the CASCADE study. Health Technol Assess. 2014;18(20):1–202.
Annunziato RA, Bucuvalas JC, Yin W, Arnand R, Alonso EM, Mazariegos GV, et al. Self-management measurement and prediction of clinical outcomes in pediatric transplant. J Pediatr. 2018;193:128–33 e2.
Mackie AS, Islam S, Magill-Evans J, Rankin KN, Robert C, Schuh M, et al. Healthcare transition for youth with heart disease: a clinical trial. Heart. 2014;100(14):1113–8.
Stringer E, Scott R, Mosher D, MacNeill I, Huber AM, Ramsey S, et al. Evaluation of a rheumatology transition clinic. Pediatr Rheumatol Online J. 2015;13:22.
Franklin A, Sloper T, Beecham J, Clarke S, Moran N. Models of Multi-agency Services for Transition to Adult Services for Disabled Young People and Those with Complex Health Needs: Impact and Costs. Progress Report. York: Social Policy Research Unit, University of York; 2009.
Colver A, Pearse R, Watson RM, Fay M, Rapley T, Mann KD, et al. How well do services for young people with long term conditions deliver features proposed to improve transition? BMC Health Serv Res. 2018;18(1):337.
Jensen PT, Karnes J, Jones K, Lehman A, Rennebohm R, Higgins GC, et al. Quantitative evaluation of a pediatric rheumatology transition program. Pediatr Rheumatol Online J. 2015;13:17.
Coyne B, Hallowell SC, Thompson M. Measurable outcomes after transfer from pediatric to adult providers in youth with chronic illness. J Adolesc Health. 2017;60(1):3–16.
Williamson PR, Altman DG, Blazeby JM, Clarke M, Devane D, Gargon E, et al. Developing core outcome sets for clinical trials: issues to consider. Trials. 2012;13:132.
Prior M, McManus M, White P, Davidson L. Measuring the “triple aim” in transition care: a systematic review. Pediatrics. 2014;134(6):e1648–61.
We acknowledge the support of the NIHR Clinical Research Network.
We thank the members of the Young Persons’ Advisory Group (UP) for their work throughout the study. We thank the members of the External Advisory Board, which included PPI contributors, among them a parent with a son and daughter with long-term conditions, representatives of two patient organisations and members of the UP group.
We thank the research assistants: Kam Ameen-Ali, Sarah Balne, Shaunak Deshpande, Louise Foster, Charlotte George, Louisa Fear, Kate Hardenberg, Guio Garcia Jalon, Holly Roper, Tracy Scott, Catherine Sheppard, Louise Ting, and Hazel Windmill.
The Transition Collaborative Group consists of the authors of this paper and Caroline Bennett, Greg Maniatopoulos, Tim Rapley, Debbie Reape, Nichola Chater, Helena Gleeson, Amanda Billson, Anastasia Bem, Stuart Bennett, Stephen Bruce, Tim Cheetham, Diana Howlett, Zilla Huma, Mark Linden, Maria Lohan, Cara Maiden, Melanie Meek, Jenny Milne, Julie Owens, Jackie Parkes, Fiona Regan, and Nandu Thalange.
This article presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme: RP-PG-0610-10112. The views expressed in this article are those of the authors and not necessarily those of the NHS, the NIHR or the Department of Health. The funder took no part in the collection, analysis or interpretation of the data, in the writing of the article nor in the decision to submit the article for publication.
Availability of data and materials
The quantitative data that support our findings are available on reasonable request from the corresponding author, Allan Colver. The qualitative data are not available because they are difficult to anonymise and we had not sought permission for data sharing.
The study sponsor, Northumbria Healthcare NHS Foundation Trust, had no role in the study design, in the collection, analysis and interpretation of data, in the writing of the report, nor in the decision to submit the article for publication. AFC had an honorary contract with Northumbria Healthcare, and GD-P was employed by Northumbria Healthcare.
Ethics approval and consent to participate
The study received a favourable ethics opinion from Newcastle and North Tyneside1 Research Ethics Committee, numbers 12/NE/0059 and 12/NE/0284. All participants gave informed, verbal and written consent to join the study.
Consent for publication
The authors declare that they have no competing interests.
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Table S1. Demographic data for those at baseline and final visit. Table S2. Comparison of baseline and final visit scores for outcomes. (DOCX 50 kb)