Er is veel gepubliceerd over de transitie van kinderzorg naar volwassenenzorg. Veel literatuur betreft beschrijvingen van de ervaringen van jongeren, ouders/verzorgers en naasten en zorgverleners voorafgaand aan, tijdens en (in mindere mate) na afloop van de overdracht van zorg. Tegelijk is er nog weinig bewijs over wat de meest effectieve manieren en interventies zijn om een soepele transitie en overdracht voor jongeren te bewerkstelligen. Dit komt doordat transitiezorg een complex zorgproces is waarbij diverse partijen betrokken zijn, de context gevarieerd is, en die bovendien meerdere interventies omvat en een persoonsgerichte aanpak vereist. Wel bestaat er ruime consensus over de overkoepelende principes voor transitiezorg. Deze module beschrijft deze overkoepelende principes, de organisatorische aspecten en de randvoorwaarden van transitiezorg.

Description of studies

Yassaee (2019) conducted a systematic review of the literature, search up to May 2017. They aimed to synthesize evidence regarding the optimum age of transfer from child to adult health services. They included systematic reviews with a clearly formulated search strategy, focusing on the transition from child to adult health services for patients suffering from long term health conditions, with outcome data from adult services. They assessed the quality of eligible studies (n=43) using the R-AMSTAR checklist (Kung, 2010), and excluded any with a score < 22. They included 15 systematic reviews.

Campbell (2016) conducted a systematic review and meta-analysis, with a search up to June 2015. They aimed to evaluate the effectiveness of interventions designed to improve the transition of care for adolescents from pediatric to adult health services. They included randomized controlled trials, controlled before- and after-studies, and interrupted time-series studies that evaluated the effectiveness of any intervention (care model or clinical pathway), that aimed to improve the transition of care for adolescents from pediatric to adult health services. Participants were adolescents with any chronic condition that required ongoing clinical care, who were leaving pediatric services and going on to receive services in adult healthcare units, and their families, were considered. Participating providers included all health professionals responsible for the care of young people. Four studies were included in the review, one of which (Steinbeck, 2014) was not included in the NICE Guideline Transition from children’s to adults' services for young people using health or social care services (2016).

Cleverley (2018) conducted a scoping review of studies published between 1980 and 2016, and did not report any formal search date. They aimed to identify the core components of interventions that facilitate successful transition from child and adolescent mental health services to adult mental health services. They included studies examining the transition from CAMSH to AMSH, conducted in acute care settings, primary care settings, or community services settings, and excluded studies focusing on developmental disorders such as autism and associated intellectual disabilities. They included 56 peer reviewed and 30 non peer-reviewed studies.

Nguyen (2017) conducted a systematic review of literature published between January 2003 and November 2015, aiming to identify and compare models of care that may be used to facilitate the transition from child and adolescent mental health services (CAMHS) to adult mental health services (AMHS), and to discuss trends and implications to inform future research and practice. They did not report any formal search date. They included 3 peer reviewed publications in English that explicitly described a care model supporting transition from CAMHS to AMHS, that included young people with mental health disorders. They reported the results of the review according to the PRISMA statement (Moher, 2009).

Eros (2019) conducted a systematic review according to the GRADE framework (Schünemann, 2013), with a search of the literature up to February 2019. They aimed to summarize the current transition practices in inflammatory bowel disease (IBD) and to comprehensively assess their effects on transition-related outcomes. They included 23 studies of patients who were between 15 and 25 years old with IBD, who took part in structured transition interventions (STIs) or patient education programs (PEPs). STIs are complex, multidisciplinary interventions designed to provide additional support in the transition period. A joint visit was the most common form of STI, either as sole intervention or as a part of a complex transition program. The number and the setting of the joint visits differed. PEPs were also diverse, including workshops and the application of web-based or text-delivered learning materials.

Dallimore (2018) conducted a systematic review, with publications published between 2000 and March 2016. They included qualitative as well as quantitative research. One of three aims was to determine the effectiveness, cost effectiveness and wider impacts of interventions to support transition for young people with chronic kidney disease. They included studies that proposed, reported on or evaluated interventions to support the transition of young people with chronic kidney disease from child to adult health care services. Twenty-four studies were included and analyzed using principles adapted from the mixed method synthesis design used by the Evidence for Policy and Practice Information and Coordinating Centre (EPPI, n.d.). Separate streams of evidence were created for each of the three aims followed by an overarching synthesis.

In a systematic review, Burke (2018) searched the literature up to February 2016, aiming to review and summarize, the transitional care literature using two long-term health conditions (LTCs): epilepsy and juvenile idiopathic arthritis (JIA). Inclusion criteria were: primary research on transition from pediatric to adult health care; studies including patients, parents, carers, and healthcare professionals; studies reporting outcomes of transition process; studies reporting experiences of transition. They included 28 studies. Qualitative literature concerning experiences and processes of transitional care was integrated using thematic analysis, quantitative studies were grouped by methodology and outcomes.

Kerr (2017) aimed to explain how intervention processes interact with contextual factors to help transition from children’s to adult services for young adults with life-limiting conditions. In a systematic review, they searched the literature up to April 2016. They included studies relevant to the transition to adult services amongst young adults with life-limiting conditions, in total 78 studies (11 reviews, 65 observational studies, and 2 randomized controlled trials). They conducted a realist literature review, which is a theory driven approach to evaluation aiming to “make explicit the underlying assumptions about how an intervention is supposed to work and then gather evidence in a systematic way to test and refine the theory” (Pawson 2004). A realist review offers explanations constructed around three ingredients: context (C), mechanisms (M) and outcomes (O), framed as CMO configurations.

Results

Timing of transfer

Yassaee (2019) found that the optimum age of transfer was 18 in all the reviews which found evidence of a specific optimum age of transfer, based on patients preferences, disease related outcomes, and social outcomes such as employment status and substance misuse. An optimum age window for transfer of 18 to 19 years was found in all but one of the reviews. They concluded there was moderate evidence that models of transition which transfer young people in late adolescence or early adulthood can improve transition outcomes and patient satisfaction.

Continuity of care

Campbell (2016) included the study of Steinbeck (2014) which reported that 79 % of the patients in the intervention group - standardized telephone communications over 6 months with a transition coordinator - and 10 % of the patients in the control group had transferred to adult healthcare services at the last follow-up (12 months, p=.20), that the rate of diabetes related hospitalizations during study period were 7 % in the intervention group and 25 % in the control group (p=.60), and that the target number of clinic visits (3-5 per year) was reached by 5/9 in the intervention group and 2/9 in the control group during the study period. Further, the median time taken to transfer was 15 weeks (IQR 8 to 19) in the intervention group and 14 weeks (IQR 11 to 20) in the control group. Campbell (2016) further compared the effect of transitional care versus usual care on patient initiated communications, in Steinbeck (2014, RR 4.87 (95 % CI 0.24 to 98.18) favoring transitional care) and Huang (2014: RR 1.5 (95 % CI 0.32,6.94) favoring transitional care (no pooled data)), where no significant differences were found.

Core elements of transition

Cleverley (2018) identified six core elements of healthcare transition: transition policy, transition tracking and monitoring, transition readiness, transition planning, transfer of care, and transfer completion, and suggested that they be used in the development of an integrated pathway and care coordination to improve transition experiences and outcome.

The main themes resulting from Burke’s (2018) thematic analysis of qualitative studies were communication, continuity, and capability. They concluded that there is a lack of research evaluating the effectiveness of interventions to support young people moving to adult care. Further, that a set of core outcomes to measure transition is needed to improve the quality of research in this field.

Kerr (2017) identified six CMO configurations: an early start to the transition process, effective communication and collaboration between children’s and adult service providers, orientating the young adult to adult services and optimizing relationships with children’s and adult service providers who demonstrate a person-centered approach, the engagement of a key worker, interdisciplinary and interagency joint working, and the development of an autonomous young adult throughout the transition process. They recommended that a successful transition should be seen as a core responsibility for both children’s and adult services, and that transition interventions include a focus on increasing the young adults’ confidence in decision-making and helping them develop collaborative relationships with adult services.

Models of transition care

Nguyen (2017) identified three models of transition care in the literature: the Framework for Understanding Mental Health Service Utilization, the Transition to Independent Process Model, and the Transition Service Integration Model. They concluded that there are gaps in current models of care pertaining to sexuality, culture, finance, environment, and administration, and that an integrated and collaborative approach is essential in supporting continuity of care and facilitating successful transitions from CAMHS to AMHS.

Eros (2019) concluded that STIs and PEPs in patients with IBD may improve adherence, disease-specific knowledge, willingness to attend clinical visits, and self-efficacy, transition competence, and may result in a higher level of patient satisfaction.

Dallimore (2018) reported an absence of evidence of the effectiveness or `added value' of integrated health and social care renal teams, very limited evaluation of interventions and no evidenced consensus regarding timings of interventions. Further, that pathway interventions evaluated have been process-driven with few nonclinical or long-term evaluations, and with a lack of nonclinical outcomes for young people.

Level of evidence of the literature

See 'Search and select (Methods)'

A systematic review of the literature was performed to answer the following question:

Clinical question

What approaches to providing transition support for those who move from child to adult services are effective and/or cost-effective?

Why this is important

Many transition policies exist and there are well-established local models for supporting and improving transition. These models are usually context- and service-specific and very few have been tested for their clinical and cost-effectiveness. There is much evidence about the nature and magnitude of the problems of transition from children’s to adults’ services but very little on what works. Although there were gaps in effectiveness evidence across both children’s and adults’ services, the committee agreed that research could usefully focus in particular on transition interventions in adult services and on young adults receiving a combination of different services.

PICO

Search and select (Methods)

Updating NICE Guideline for Dutch guideline on Transition care

Prioritization of PICOs

In 2014, the working group for the National Institute for Health and Care Excellence (NICE) Transition care Guideline conducted an extensive literature search to find answers to a number of clinical questions. Based on their review of the literature, they formulated nine scientific questions (PICOs) that, at the time, had insufficient scientific support. The Dutch working group ordered the nine PICOs (based on the information gained in the stakeholder meeting of the 24^th of June, 2019) from highest to lowest priority and selected the five with the highest priority for an update:

1. transition support for young adults (PICO 2.1 NICE Guideline; literature analysis 1 in this document);
2. role of families in supporting young adults (PICO 2.2 NICE Guideline; literature analysis 2 in this document);
3. role of primary care in supporting young adults (PICO 2.3 NICE Guideline; literature analysis 3 in this document)
4. support to carers and practitioners to help young people’s independence (PICO 2.5 NICE Guideline; literature analysis 4 in this document)
5. supporting young people to manage their conditions (PICO 2.6 NICE Guideline; literature analysis 5 in this document)

The PICOs related to the following topics were not prioritized by the working group: consequences and costs of poor transition; transition for special groups: young offenders institutions; transition in special groups: looked-after young people; training for practitioners.

Search

We updated the search from the NICE Guideline on Transition care to answer the clinical questions. The full search of the NICE Guideline can be found in their Appendix A. We made the following adaptations to the NICE search in order to answer the clinical questions:

• We searched in five databases (instead of 20 databases), namely: Cinahl, Embase, Medline, PsychInfo and Cochrane;
• in the Cochrane library, we used the search term ‘transition to adult care’ instead of ‘continuity of patient care (explode)’, since ‘after care’ was added by the Cochrane library to ‘continuity of patient care (explode)’ after the NICE Guideline working group finished their search. ‘After care’ gave a lot of noise in the search results;
• we omitted the trials from the trial register of the Cochrane Library, since no results were available yet;
• we used a systematic review filter, since the NICE search was very extensive. The working group wanted an overview of newly added literature since the NICE Guideline was published and therefore, a systematic review filter was chosen.

We updated the NICE Guideline search from June 2014 until the 3^rd of October, 2019. The detailed search strategy can be found under 'zoekverantwoording'. Some articles in our search have a publication date before 2013 (see exclusion table), since these articles were added to the scientific databases after June 2014 (= final month in search NICE Guideline). Therefore these articles did not appear in the search results of the NICE Guideline at that moment.

Select

a. Pre-selection based on title / abstract

The pre-selection was based on the pre-selection PICO described, which was the same as the NICE-richtlijn.

b. Final inclusion based on full texts

Studies were selected based on the following criteria:

• The study should answer the PI(C)O (see full PICO above);
• the study was conducted in Europe, Canada, USA, Australia or New-Zealand (in order to have comparable circumstances for transition care);
• the article was available in full text (if we could not find it via our own resources or if the National Library of the Netherlands did not have access either, the article was excluded);
• the review (scoping, systematic) was methodologically sound:
  • >1 databases were searched;
  • the search strategy was described (transparent search strategy);
  • clear selection criteria were used (transparent selection criteria);
  • exclusion reasons of studies were described.
• the review conducted their search after the search date of the NICE Guideline (after June, 2014);
• we included reviews on specific diseases only if generic aspects could be filtered to answer our clinical questions;
• we included qualitative reviews and mixed methods reviews, in order to capture the complex process of transition care. Qualitative studies on transition care provide rich data to answer our clinical questions. Consequently, we also included reviews that describe non-comparative studies.

The systematic literature search resulted in 450 hits. Studies were initially selected based on title and abstract screening; the working group included 198 studies to read in full text. After reading the full text, 181 studies were excluded (see the table with reasons for exclusion), and 17 studies were included (see Figure 1).

Figure 1 Overview of study selection

Writing considerations (‘Overwegingen’)

In the considerations (Dutch: ‘Overwegingen’) we summarized per PICO the applicable evidence statements derived from the NICE Guideline, 2016. In ‘Bijlage 2’, an overview is shown of all evidence statements from the NICE Guideline.

Results

One study was included in the analysis of the literature. Important study characteristics and results are summarized in the evidence tables. The assessment of the risk of bias is summarized in the risk of bias tables.

Literature analysis 1 - effective transition appraoches

What approaches to providing transition support for those who move from child to adult services are effective and/or cost-effective?

Literature analysis 2 – helping families to support young adults

What is the most effective way of helping families to support young people who have been discharged from children’s services (whether or not they meet criteria for adult services)?

This clinical question includes the following underlaying questions:

1. What are the experiences of families and carers in respect of young people’s transitions? What works well?

Literature analysis 3 - role of general practitioners

What are the most effective ways for primary care services to be involved in planning and implementing transition, and following-up young people after transfer (whether or not they meet criteria for adult services)?

Literature analysis 4 - support to carers and practitioners)

What is the most effective way to help carers and practitioners support young people’s independence?

Literature analysis 5 - self-management interventions for young adults

What is the relationship between transition and subsequent self-management?