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BY 4.0 license Open Access Published by De Gruyter April 29, 2020

Somatic outcomes of young people with chronic diseases participating in transition programs: a systematic review

  • Johanna Becker EMAIL logo , Esther Ravens , Lars Pape and Gundula Ernst



There is growing evidence that the health of young people with chronic health conditions deteriorates during the transfer from child-centred to adult-oriented health care. Risks include not only the deterioration of health status in general but also the occurrence of secondary diseases and adverse events. Transition programs have been implemented. However, there is a lack of evidence about whether they reduce these risks and which interventions should be principally included. Evidence-based guidelines for the transition of young people should be introduced. In this study we therefore aim to summarise actual evidence on somatic outcomes during the transition period.


A systematic literature review was conducted. Two independent reviewers searched in electronic databases (Cochrane, Embase, PubMed, Web of Science) for intervention studies that aimed to improve transition. Last update of search was October 31st 2018. Grey literature was also searched. Studies were included if they examined participants aged 11 years or older suffering from a chronic health condition and evaluated interventions aimed to improve somatic outcomes after transition. Controlled trials or studies with a measurement before and after intervention were considered. The certainty of evidence was assessed using the GRADE approach. Additionally, each study was graded using a modified grading scale based on GRADE.


28 studies met the inclusion criteria. Patients suffered from different chronic conditions such as type 1 diabetes, solid organ transplantation, inflammatory bowel disease or cystic fibrosis. Interventions had different components such as transition checklists, workshops, web-based interventions, transition plans, joint visits or transition coordinators. Outcomes included mortality and morbidity. They varied according to chronic condition. Thirteen studies showed beneficial effects in the intervention group or in post-intervention measurements. The certainty of evidence was very low.


A considerable number of studies evaluating transition interventions was identified. Transition interventions had some beneficial effects. Workshops, joint visits and longer or multidisciplinary appointments may be particularly effective components. Transition guidelines could be based on these results. However, due to the limitations of the included studies it is difficult to draw firm conclusions. More research is needed to further evaluate the effectiveness of transition interventions. It should address the deficits identified from prior studies, such as poor study design, short follow-up time or small sample sizes.


Adolescence is a challenging time in general due to emotional and cognitive developmental challenges as well as social and educational changes. However, adolescence also offers the opportunity to develop and establish healthy behaviour [1]. Young people (YP) become increasingly independent and need to take more responsibility for themselves. This is particularly important if they have special health care needs or are suffering from a chronic disease, as are 13% of all children and adolescents in Germany [2]. These YP have to cope with additional challenges as they must independently achieve good adherence and engage with adult care services that are often different from the paediatric ones [3].

Transition should be a “purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centered to adult-oriented health care systems“ [4]. This period lasts from multiple months to several years, unlike transfer as the one-off event of change from paediatric to adult care. Transition has a growing importance nowadays for several reasons. Due to improved health care, children formerly mostly receiving paediatric care are now surviving into adulthood and are thus in need of transition to adult care. This concerns, for example, patients suffering from cystic fibrosis (CF), where over 51% of all patients in Europe and the US are older than 18 years [5], [6]. Furthermore, more than 90% of children with congenital heart disease survive into adulthood [7].

However, patient and provider surveys showed that there are many barriers to successful transition [8]. In addition, YP with chronic diseases express a need for interventions during transition [9], [10]. Reported barriers include family and provider reluctance to end a long-standing therapeutic relationship [11], only rare opportunities for appointments without parents [12], and insufficient discussion about youth-specific topics such as sexuality, drugs or alcohol [8], [12], [13]. Only a few YP with special health care needs or chronic diseases sufficiently discuss transition with their physicians [14], [15] and many feel that services fail to meet their needs [16], [17]. Presently, 24% of YP with special health care needs in the US experience a care gap between paediatric and adult health care [18].

In the future, health care systems must adapt to the changing needs of YP. Furthermore, they should enable a smooth transition from paediatric to adult care and prevent lapses of management after transfer. Studies show that these lapses of care are common in patients suffering from congenital heart disease [19], type 1 diabetes (T1D) [9], [20], [21] or being human immunodeficiency virus (HIV)-positive [22]. Lapse of care is a major risk for unsuccessful transition, which is associated with adverse health outcomes [19], [23], [24]. Another common problem after transition is non-adherence which correlates with deterioration of somatic outcomes either [25], [26]. Improving somatic outcomes is a major goal of transitional care, as patients’ health should be maintained beyond transition. However, as assessed by various studies, this is presently not the case and somatic outcomes frequently deteriorate after transfer [20], [27], [28], [29]. Concerning adolescents with T1D, the odds of having poor glycaemic control are higher for those who transfer to adult care [20], [28], and diabetes-associated complications occur more frequently [27]. Renal transplant recipients have a high risk of graft loss during transition and emerging adulthood [29], [30]. Furthermore, patients with a complex medical history and lower levels of education seem to be at particularly high risk of deteriorating health after transfer [31].

There is a lack of evidence about whether transition programs can prevent deterioration of somatic outcomes and about which interventions are best included in such programs [32], [33]. This systematic review aims to summarise existing evidence to enable the development of evidence-based guidelines and to promote seamless care for adolescents.


Structure based on PRISMA

The well-established “Preferred Reporting Items for Systematic Reviews and Meta-Analysis” (PRISMA) checklist [34] was used as the basis for this systematic review, and the PRISMA study flow chart [34] utilised (Figure 1).

Figure 1: PRISMA study flow chart.
Figure 1:

PRISMA study flow chart.

Inclusion criteria

The inclusion criteria were defined on the basis of the PICO framework (Table 1). PICO points out different parts of a research question: Population, Intervention, Comparison and Outcome. It is especially useful for asking questions concerning therapy [35].

Table 1:

PICO framework.

Can an intervention aimed to improve transition to adult care ameliorate somatic outcomes of chronically ill YPs?
Population11 years or older
Somatic chronic diseases or health conditions
InterventionIntervention aimed to improve transition to adult care
ComparisonControl group or comparison between two time points (before and after intervention)
OutcomeSomatic outcomes


All studies examining participants aged 11 years or older with chronic health conditions or special health care needs were included. Studies examining participants with psychiatric disorders or cognitive disabilities were excluded.


All interventions aimed to improve the transition of care for YP from paediatric to adult health services were included.

Comparison, study design

Included were randomised controlled trials (RCTs), intervention studies with non-randomised control groups (NRCTs) and studies with measurements before and after intervention in a single group design.


All studies measuring somatic outcome parameters were included. Somatic outcomes include surrogate parameters that indirectly refer to or influence morbidity and mortality such as haemoglobin A1c (HbA1c). Studies that exclusively examined psychosocial or behavioural outcomes, such as quality of life or transition-specific knowledge, were the subject of another review. If studies examined multiple outcome parameters, only somatic outcomes were considered. Additional psychosocial or behavioural outcomes were discounted.

Databases and other resources

The international electronic databases Cochrane Library, Embase, PubMed and Web of Science Core Collection were searched by two independent reviewers (JB, ER) for relevant studies and systematic reviews.

Reference lists of prior reviews were searched and selected experts were contacted to identify additional studies.

Search strategy

In all databases the same search terms were used. Search terms included transition- and age-specific terms. Alternative spellings and truncations were considered. Boolean operators such as ‘AND’ or ‘OR’ were used. For each database, the search strategy was adapted with database-specific keywords. To avoid bias in the review process two reviewers developed independent search strategies in advance. Final search strategies of all databases can be found in the online supplement (Supplementary tables 1–4).

Study selection

Studies with an English title and abstract, published between June 2011 and October 2018, were considered. A review from Crowley et al. with similar inclusion criteria was published in June 2011 and therefore covers older literature [33].

Title and abstract of articles identified in electronic searches and through other sources were screened after deletion of duplicates. Full texts of potentially relevant studies were read and checked for inclusion. Disagreements were discussed to bring about consensus and authors were contacted in case of uncertainties concerning specific studies.

Certainty of evidence

The certainty of evidence was assessed by using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach [36]. The GRADE process was developed for the classification of recommendation strengths within the framework of guidelines and systematic reviews. The quality of evidence is thereby divided into four levels – high, moderate, low or very low – based on various criteria. Normally each outcome is graded separately [36]. However, in this review it was decided to additionally grade per study, as it was estimated that heterogeneous outcome measures would prevent outcome summaries of different studies.

In addition to GRADE, a modified grading scale based on GRADE was established. Previous reviews have suggested that studies aiming to evaluate transition interventions may have low quality of evidence. The purpose of the grading scale was to differentiate these studies from each other and asses if there are considerable differences in quality of evidence in the lower range. Therefore, quality of evidence was divided into eight levels based on the criteria shown in Table 2.

Table 2:

Modified grading scale.

CriteriaPossible scorea
Controlled trial1
No increased risk of selection bias1
No increased risk of other biases1
No indirectness of evidence1
Precision based on sample size:
n > 150 (or n > 40 if rare disease)1
n > 100 (or n > 20 if rare disease)1
  1. RCT, randomised controlled trial. aFor each criterion met, the number of points indicated in the right column will be given (8 points in total).


Included studies

Search in electronic databases and through other sources identified 4542 records. Abstracts of 2685 studies after deleting duplicates were reviewed and full-text was obtained for 75 studies, of which 39 were excluded and are listed with reason for exclusion in the online supplement (Supplementary table 5). Twenty-eight studies met the inclusion criteria (Figure 1). Characteristics of all included studies can be found in the online supplement (Supplementary table 6).

Study designs

Included were four RCTs, 15 NRCTs and nine intervention studies with single group design. Eight of 15 NRCTs used historic control groups.

Certainty of evidence

The certainty of evidence, using the GRADE process, was very low in all outcomes shown in Table 3. When assessing quality of evidence per study seven studies [37], [38], [39], [40], [41], [42], [43] showed low and 22 very low quality of evidence.

Table 3:

Summary of findings of most frequently assessed outcomes.

OutcomesNumber of participants (studies)ResultsCertainty of Evidence (GRADEc)Comments
Mortality145 (3 studies)Beneficial effectsa (1 study): Number of deaths: Intervention: 0/20 (0%) Control: 4/14 (28.5%) (p < 0.01)Very low
No effectsb (2 studies)
Graft rejection179 (5 studies)Beneficial effects (1 study): Number of rejections: Intervention: 3/33 (9.1%) Control: 7/26 (34.6%) (p < 0.05)Very low
No effects (1 study)
Descriptive analysis only (2 studies): Number of rejections: 1) Intervention: 0/12 (0%) Control: 3/9 (33%) 2) Intervention: 2/16 (12.5%) Control: 1/16 (6.3%)
Diabetes-associated complications189 (3 studies)Beneficial effects (1 study): Number of occurrences of hypoglycaemia: Intervention: 0/51 (0%) Control: 5/30 (16%) (p = 0.02)Very low
No effects (1 study)
Descriptive analysis only (1 study): Number of diabetic ketoacidosis: 2 years prior to transition: 3/27 (11%) During intervention: 2/53 (3.8%)No control groups
Number of occurrences of hypoglycaemia: 2 years prior to transition: 2/27 (7.4%) During intervention: 6/53 (11.3%)
Haemoglobin A1c (HbA1c)572 (9 studies)Beneficial effects (5 studies): HbA1c changeVery low
1) −0.7%No control groups
2) −0.93%
3) −0.9%
4) −0.77%
5) Intervention: −0.40% Control: +0.42% (p = 0.01)
No effects (4 studies)
Estimated Glomerular Filtration Rate (eGFR)179 (4 studies)Beneficial effects (1 study): Intervention: eGFR decreases by 11.3 mL/min/1.73 m2 Control: eGFR decreases by 8.4 mL/min/1.73 m2 (p = 0.004)Very low
No effects (3 studies)
Body mass index217 (4 studies)Beneficial effects (1 study): Intervention: 32.5 kg/m2 Control: 43.4 kg/m2 (p = 0.01)Very low
No effects (3 studies)
Blood pressure176 (3 studies)Beneficial effects (1 study): Number of patients suffering from high blood pressure: Intervention 1/31 (3.2%) Control 16/64 (25%) (p = 0.02)Very low
No effects (2 studies)
  1. aBeneficial effects were defined as showing a significantly better outcome in the intervention group or in measurements after intervention. bNo effects were defined as showing no significant differences between groups or between measurements before and after intervention. cGRADE Working Group grades of evidence: High quality: Further research is very unlikely to change our confidence in the estimate of effect. Moderate quality: Further research is likely to have an important impact on our confidence in the estimate of effect and may change the estimate. Low quality: Further research is very likely to have an important impact on our confidence in the estimate of effect and is likely to change the estimate. Very low quality: We are very uncertain about the estimate.

In the 8-point grading scale (Table 2), where one point indicates very low and eight points very good quality of evidence, none of the included studies received 7 or 8 points, 7% of them received six, 32% five, 21% four, 21% three and 14% two points. 4% of studies received one point.

We could not assess consistency and selective reporting due to small sample sizes and heterogeneity of study characteristics.

Study populations

The study population consisted of 1554 participants with the same health condition per study in all studies except one [41]. Chronic health conditions of samples are given in Figure 2. Age of the participants varied between 11 and 59 years; however, most participants were YP.

Figure 2: Number of studies that used samples with certain chronic health conditions.
Figure 2:

Number of studies that used samples with certain chronic health conditions.

Outcome parameters

Outcome parameters varied according to disease. They included mortality, indices of morbidity and surrogate parameters such as HbA1c, body mass index (BMI) or forced expiratory volume (FEV1). All outcome parameters identified are listed in the online supplement (Supplementary table 7).


All studies used interventions which consisted of combined elements, in most cases as a dedicated transition program. Of these elements, appointments with professional groups other than doctors (i.e. social workers, psychologists or nurses) or extended medical appointments were used in 43% of included studies. Web-based interventions such as websites, online computer programs or interactive online interventions (21%) were also used. 18% of studies examined joint visits, meaning that YP had appointments where both paediatric and adult provider were present. In 18% of included studies patients were transferred to adult care not necessarily by the age of 18, but according to their transition readiness or the opinion of their paediatrician.


Thirteen [24], [39], [40], [44], [45], [46], [47], [48], [49], [50], [51], [52], [53] of the 28 included studies showed beneficial effects. None of the included studies demonstrated significantly better outcomes in the control group. One study [54] showed significantly worse outcomes in measurement after intervention. 56% of studies assessing HbA1c showed beneficial effects [24], [44], [47], [50], [52], whereby this proportion did not exceed 25% in other outcomes like graft rejection, BMI or estimated glomerular filtration rate (eGFR) (Table 3).

Intervention components were evaluated by several studies, whereby some of them showed beneficial and others no effects (Figure 3). Beneficial effects were defined as having at least one outcome significantly better in the intervention group or in measurements after intervention. No effects were defined as showing no significant differences between groups or between measurements before and after intervention. 83% of studies that examined workshops showed beneficial effects, followed by those that assessed joint visits (60%) and extended or multidisciplinary appointments (58%). Seventeen percent of studies examining phone calls or SMS-based interventions showed beneficial effects.

Figure 3: Number of studies that evaluated certain intervention components.Total: Total number of studies. Beneficial effects: Number of studies showing a significantly better outcome in the intervention group or in measurements after intervention compared to the control group or measurements before intervention. No effects: Number of studies showing no significant differences between groups or between measurements before and after intervention.
Figure 3:

Number of studies that evaluated certain intervention components.

Total: Total number of studies. Beneficial effects: Number of studies showing a significantly better outcome in the intervention group or in measurements after intervention compared to the control group or measurements before intervention. No effects: Number of studies showing no significant differences between groups or between measurements before and after intervention.


This review aimed to assess whether interventions can ameliorate somatic outcomes of YP in the transition period and determine which intervention components are particularly effective. There are reviews on this topic already [32], [33]. However, this review is a valuable contribution to prior research efforts as it covers more health conditions and transition interventions than previous reviews. This is due to available evidence consisting of 28 studies with 1554 participants.

We could show that interventions aimed to improve transition can ameliorate somatic outcomes. Generally, the effectiveness of transitional interventions on certain outcomes is difficult to infer due to varying lengths of follow-up and sample sizes. Concerning patients suffering from T1D, many studies found an improvement of HbA1c values. However, findings concerning diabetes-associated complications like diabetic ketoacidosis or hypoglycaemia were inconsistent. In one NRCT [52] hypoglycaemias occurred less frequently in the intervention group compared to controls. In contrast, there were no effects observed in one RCT [55]. A reason for the inconsistency may be that severe hypoglycaemias are rare events and are therefore not to be expected given the size of sample and the length of follow-up period.

Findings were also inconsistent as to whether participation in interventions resulted in reduced mortality or graft rejection in patients who had received a liver or renal transplant. This could be due to the fact that long-term outcomes such as transplant failure or mortality can only be recorded with long follow-up periods. One of three studies examining mortality showed beneficial effects [45]. Significantly fewer deaths were observed in an intervention group compared to a historic control group. However, there may be confounding effects due to study design. Patients in the historic control group transferred at a time when the life expectancy of transplant recipients was generally still lower. Similarity of study groups cannot be assured concerning participants of the intervention group that transferred up to 17 years later than the historic control group. This is due to changes in medical care and declining mortality of transplant recipients over the past years in general [56]. Hence, results should be treated cautiously.

Across reviewed studies no effects were shown among some studies without a control group but with measurement before and after intervention [57], [58], [59]. However, this can also be considered a success, indicating that health remained stable during the transition phase.

Although findings were inconsistent concerning certain outcomes, overall evidence suggests that it is possible for transition interventions to ameliorate somatic outcomes in chronically ill YP.

Concerning the different components of transition interventions, it was observed that multidisciplinary appointments or more time at medical appointments, the use of transition coordinators and transition summaries or transition passes were most commonly described. We considered appointments as multidisciplinary if patients had appointments with social workers, psychologists, nurses or other professionals. This broad definition of multidisciplinary appointment may be a confounding effect regarding its frequent occurrence in the included studies as well as concerning the approaches, topics and qualifications of the different professional groups.

Workshops, joint visits and multidisciplinary appointments or more time at medical appointments were most successful. Studies applying one of these three components were the only ones showing rather beneficial than no effects. Of these components workshops were most effective with five out of six studies showing beneficial effects [24], [44], [46], [49], [52]. In these studies workshops were embedded in multi-component interventions.

The intervention components mentioned above were particularly beneficial and should therefore be considered for primary inclusion in transition programs.

Our findings are in line with the previous review of Crowley et al. [31]. The review, with inclusion criteria similar to our own, also showed that transition interventions have beneficial effects. The most successful transition components were transition clinics and patient education. However, only studies examining patients with T1D were identified so that effects could not be generalised to other chronic conditions. Evidence was limited due to the poor methodological quality of the included studies.

In contrast, the review of Campbell and colleagues [32] found no effects on somatic outcomes, but was limited due to the small number of studies identified (four studies; n = 238) and thus covered a narrow range of interventions and clinical conditions. This was due to the fact that it included RCTs only. In this review we additionally included NRCTs and intervention studies with measurements before and after intervention. However, when considering RCTs only, we must confirm that there were no beneficial effects on somatic outcomes in intervention groups when compared to controls [37], [41], [43], [55]. Future research should ascertain whether the positive effects found for NRCTs can also be proven in RCTs.

However, there are barriers to applying a high standard of methodology in studies assessing transition interventions. For example, adequate blinding is neither meaningful nor possible for many transition interventions and there are studies that consider RCTs in the domain of transitional care to be unethical [60], [61].

Our estimate of the effectiveness of transition interventions is limited for the following reasons. Importantly, one limitation relates to the evaluation and comparison of the identified transition interventions. This is attributed to the great variety of types, intensity and duration of interventions. All interventions had different components, of which no separate evaluation was carried out. Ascertaining the effect of the components is thus difficult.

Estimate of the effect is furthermore limited due to the lack of studies with a rigorous methodology and an appropriate study design. Only four RCTs met the inclusion criteria. Many NRCTs were included but some used historic controls. It is possible that effects are biased in these studies when similarity of historic control and current study sample cannot be assured [62]. Further limitations include the frequent occurrence of bias, especially selection bias. For example, high rates of loss to follow-up as well as low response rates were common among included studies.

The risk of limitations due to imprecision varied according to study as sample sizes ranged from 18 to 120. Follow-up period was generally short, ranging from six to twelve months in most studies. It is thus not possible to judge the sustainability of outcomes. Furthermore, the full effect of interventions on somatic outcomes cannot be recorded. In particular, the long-term effects cannot be determined and may be underestimated.

Although the identified studies examined various chronic diseases, it is not certain if results can be generalised to all chronic health conditions. In our sample, rare conditions such as CF or organ transplantations were overrepresented, with seven and five studies, respectively. This could be because adherence and continuity of care is particularly important for these patients.

Using the GRADE approach, the limitations due to study designs, biases, sample sizes and follow-up data led us to judge the certainty of evidence to be very low. Therefore, we are very uncertain about the estimate.

Even though the estimate of the effectiveness of transition intervention is limited, some conclusions can be drawn. It will probably take time until results of future research, especially of high-quality RCTs, are available. However, this should not be awaited before better transition programs are initiated based on actual evidence. An important barrier to the implementation of transition programs in Germany and many other countries is a lack of adequate funding. Only joint visits are a part of one of the few structured transition programs in Germany [63] that is funded by some health insurance schemes. Future efforts should promote transition interventions that have been identified by this review as being particularly useful and ensure they are covered by health insurance funds. It is important to bear in mind that successful transition will probably reduce morbidity and mortality and thereby reduce long-term health care costs. Consequently, the allocation of financial resources for transition can lead to lower global healthcare costs overall.


In comparison to former reviews a much larger number of studies evaluating transition interventions was identified. Beneficial effects were observed in many of them, but findings were inconsistent concerning certain outcomes. Overall, transition interventions can be recommended. Workshops, joint visits and multidisciplinary appointments or more time at medical appointments, in particular, had beneficial effects. However, quality of evidence is low due to a lack of studies with good methodology and rigorously evaluated intervention methods. Guidelines could be based on the findings of this review, but should be supported by expert consensus. Future research should particularly focus on random assignment to study groups to prevent selection bias, whilst addressing deficits such as short follow-up time or small sample sizes identified from previous studies.

  1. Research funding: This research has not been funded.

  2. Author contributions: JB and EH have performed the literature research. JB has written the first version of the manuscript. EH, LP and GE have revised the manuscript and participated in study design. All authors have accepted responsibility for the entire content of this manuscript and approved its submission.

  3. Competing interests: We state no conflict of interest.


1. Sawyer SM, Afifi RA, Bearinger LH, Blakemore SJ, Dick B, Ezeh AC, et al. Adolescence: a foundation for future health. Lancet 2012;379:1630–40.10.1016/S0140-6736(12)60072-5Search in Google Scholar

2. Scheidt-Nave C, Ellert U, Thyen U, Schlaud M. Prevalence and characteristics of children and youth with special health care needs (CSHCN) in the German Health Interview and Examination Survey for Children and Adolescents (KiGGS). Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2007;50:750–6.10.1007/s00103-007-0237-3Search in Google Scholar

3. Wells F, Manning J. Transition of care from children’s to adult services. Nurs Child Young People 2017;29:30–4.10.7748/ncyp.2017.e897Search in Google Scholar

4. Blum R, Garell D, Hodgman C, Jorissen T, Okinow N, Orr D, et al. Transition from child-centered to adult health-care systems for adolescents with chronic conditions. J Adolesc Health 1993;14:570–6.10.1016/1054-139X(93)90143-DSearch in Google Scholar

5. Cystic Fibrosis Foundation Patient Registry. 2018 Annual Data Report. Bethesda, Maryland. 2019. Available at: in Google Scholar

6. Zolin A, Orenti A, Naehrlich L, van Rens J. ECFSPR Annual Report 2017. 2019. Available at: in Google Scholar

7. Moons P, Hilderson D, Van Deyk K. Congenital cardiovascular nursing: preparing for the next decade. Cardiol Young 2009;19(Suppl 2):106–11.10.1017/S1047951109991703Search in Google Scholar PubMed

8. WHO/UNAIDS. Global standards for quality healthcare services for adolescents: a guide to implement a standards-driven approach to improve the quality of healthcare services for adolescents. Geneva, World Health Organization. 2015. Available at: in Google Scholar PubMed PubMed Central

9. Van Walleghem N, Macdonald CA, Dean HJ. Evaluation of a systems navigator model for transition from pediatric to adult care for young adults with type 1 diabetes. Diabetes Care 2008;31:1529–30.10.2337/dc07-2247Search in Google Scholar PubMed PubMed Central

10. Bomba F, Herrmann-Garitz C, Schmidt J, Schmidt S, Thyen U. An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme. Health Soc Care Community 2017;25:652–66.10.1111/hsc.12356Search in Google Scholar PubMed

11. Reiss J, Gibson R. Health care transition: destinations unknown. Pediatrics 2002;110(6 Pt 2):1307–14.10.1542/peds.110.S3.1307Search in Google Scholar

12. Suris JC, Akre C, Rutishauser C. How adult specialists deal with the principles of a successful transition. J Adolesc Health 2009;45:551–5.10.1016/j.jadohealth.2009.05.011Search in Google Scholar PubMed

13. 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;13:22-015-0016-x.10.1186/s12969-015-0016-xSearch in Google Scholar PubMed PubMed Central

14. Baca CM, Barry F, Berg AT. The epilepsy transition care gap in young adults with childhood-onset epilepsy. Epilepsy Behav 2018;87:146–51.10.1016/j.yebeh.2018.06.052Search in Google Scholar PubMed

15. Lotstein DS, McPherson M, Strickland B, Newacheck PW. Transition planning for youth with special health care needs: results from the National Survey of Children with Special Health Care Needs. Pediatrics 2005;115:1562–8.10.1542/peds.2004-1262Search in Google Scholar PubMed

16. Fegran L, Hall EO, Uhrenfeldt L, Aagaard H, Ludvigsen MS. Adolescents’ and young adults’ transition experiences when transferring from paediatric to adult care: a qualitative metasynthesis. Int J Nurs Stud 2014;51:123–35.10.1016/j.ijnurstu.2013.02.001Search in Google Scholar PubMed

17. Betz CL, Lobo ML, Nehring WM, Bui K. Voices not heard: a systematic review of adolescents’ and emerging adults’ perspectives of health care transition. Nurs Outlook 2013;61:311–36.10.1016/j.outlook.2013.01.008Search in Google Scholar PubMed

18. Lotstein DS, Inkelas M, Hays RD, Halfon N, Brook R. Access to care for youth with special health care needs in the transition to adulthood. J Adolesc Health 2008;43:23–9.10.1016/j.jadohealth.2007.12.013Search in Google Scholar PubMed

19. Yeung E, Kay J, Roosevelt GE, Brandon M, Yetman AT. Lapse of care as a predictor for morbidity in adults with congenital heart disease. Int J Cardiol 2008;125:62–5.10.1016/j.ijcard.2007.02.023Search in Google Scholar PubMed

20. Agarwal S, Raymond JK, Isom S, Lawrence JM, Klingensmith G, Pihoker C, et al. Transfer from paediatric to adult care for young adults with Type 2 diabetes: the SEARCH for Diabetes in Youth Study. Diabet Med 2018;35:504–12.10.1111/dme.13589Search in Google Scholar PubMed PubMed Central

21. Kyle CJ, Patrick AW, Zammitt NN. ‘The Lost Tribe’: a study of transition care in Lothian. Br J Diabetes Vasc Dis 2015;15:70–4.10.15277/bjdvd.2015.018Search in Google Scholar

22. Castelnuovo B, Mubiru F, Nakalema S, Twimukye A, Kiragga A. Describing the retention in care of human immunodeficiency viruspositive young adults who transition from adolescent to adult care. Int Health 2018;10:318–20.10.1093/inthealth/ihx063Search in Google Scholar PubMed

23. Shulman R, Shah BR, Fu L, Chafe R, Guttmann A. Diabetes transition care and adverse events: a population-based cohort study in Ontario, Canada. Diabet Med 2018;35:1515–22.10.1111/dme.13782Search in Google Scholar PubMed

24. Pyatak EA, Sequeira PA, Vigen CL, Weigensberg MJ, Wood JR, Montoya L, et al. Clinical and psychosocial outcomes of a structured transition program among young adults with type 1 diabetes. J Adolesc Health 2017;60:212–8.10.1016/j.jadohealth.2016.09.004Search in Google Scholar PubMed PubMed Central

25. Bartlett JA. Addressing the challenges of adherence. J Acquir Immune Defic Syndr 2002;29(Suppl 1):S2–10.10.1097/00126334-200202011-00002Search in Google Scholar PubMed

26. Hood KK, Peterson CM, Rohan JM, Drotar D. Association between adherence and glycemic control in pediatric type 1 diabetes: a meta-analysis. Pediatrics 2009;124:e1171–9.10.1542/peds.2009-0207Search in Google Scholar PubMed

27. Kapellen TM, Muether S, Schwandt A, Grulich-Henn J, Schenk B, Schwab KO, et al. Transition to adult diabetes care in Germany-High risk for acute complications and declining metabolic control during the transition phase. Pediatric Diabetes 2018;19:1094–9.10.1111/pedi.12687Search in Google Scholar PubMed

28. Lotstein DS, Seid M, Klingensmith G, Case D, Lawrence JM, Pihoker C, et al. Transition from pediatric to adult care for youth diagnosed with type 1 diabetes in adolescence. Pediatrics 2013;131:e1062–70.10.1542/peds.2012-1450Search in Google Scholar PubMed PubMed Central

29. Watson AR. Problems and pitfalls of transition from paediatric to adult renal care. Pediatr Nephrol 2005;20:113–7.10.1007/s00467-004-1763-ySearch in Google Scholar PubMed

30. Foster BJ. Heightened graft failure risk during emerging adulthood and transition to adult care. Pediatr Nephrol 2015;30:567–76.10.1007/s00467-014-2859-7Search in Google Scholar PubMed

31. Alassaf A, Gharaibeh L, Grant C, Punthakee Z. Predictors of type 1 diabetes mellitus outcomes in young adults after transition from pediatric care. J Diabetes 2017;9:1058–64.10.1111/1753-0407.12536Search in Google Scholar PubMed

32. Campbell F, Biggs K, Aldiss SK, O’Neill PM, Clowes M, McDonagh J, et al. Transition of care for adolescents from paediatric services to adult health services. Cochrane Database Syst Rev 2016;4:CD009794.10.1002/14651858.CD009794.pub2Search in Google Scholar PubMed

33. Crowley R, Wolfe I, Lock K, McKee M. Improving the transition between paediatric and adult healthcare: a systematic review. Arch Dis Child 2011;96:548–53.10.1136/adc.2010.202473Search in Google Scholar

34. Moher D, Liberati AJ, Altman D, The PRISMA Group. Preferred reporting items for systematic reviews and meta-analyses: the PRISMA statement. PLoS Med 2009;6:e1000097.10.1371/journal.pmed.1000097Search in Google Scholar

35. Huang X, Lin J, Demner-Fushman D. Evaluation of PICO as a knowledge representation for clinical questions. AMIA Annu Symp Proc 2006;2006:359–63.Search in Google Scholar

36. Brozek JL, Akl EA, Alonso Coello P, Lang D, Jaeschke R, Williams JW, et al. Grading quality of evidence and strength of recommendations in clinical practice guidelines. Part 1 of 3. An overview of the GRADE approach and grading quality of evidence about interventions. Allergy 2009;64:669–77.10.1111/j.1398-9995.2009.01973.xSearch in Google Scholar

37. Ammerlaan J, van Os-Medendorp H, de Boer-Nijhof N, Scholtus L, Kruize AA, van Pelt P, et al. Short term effectiveness and experiences of a peer guided web-based self-management intervention for young adults with juvenile idiopathic arthritis. Pediatric Rheumatology 2017;15:75.10.1186/s12969-017-0201-1Search in Google Scholar

38. 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;22:150–9.10.1007/s10880-015-9427-6Search in Google Scholar

39. 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. Br Med J 2012;344:e3718.10.1136/bmj.e3718Search in Google Scholar

40. Hergenroeder AC, Moodie DS, Penny DJ, Wiemann CM, Sanchez-Fournier B, Moore LK, et al. Functional classification of heart failure before and after implementing a healthcare transition program for youth and young adults transferring from a pediatric to an adult congenital heart disease clinics. Congenit Heart Dis 2018;13:548–53.10.1111/chd.12604Search in Google Scholar

41. 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:e1639–46.10.1542/peds.2013-2830Search in Google Scholar

42. McQuillan RF, Toulany A, Kaufman M, Schiff JR. Benefits of a transfer clinic in adolescent and young adult kidney transplant patients. Can J Kidney Health Dis 2015;2:45.10.1186/s40697-015-0081-6Search in Google Scholar

43. White M, O’Connell MA, Cameron FJ. Clinic attendance and disengagement of young adults with type 1 diabetes after transition of care from paediatric to adult services (TrACeD): a randomised, open-label, controlled trial. Lancet Child Adolesc Health 2017;1:274–83.10.1016/S2352-4642(17)30089-5Search in Google Scholar

44. Agarwal S, Raymond JK, Schutta MH, Cardillo S, Miller VA, Long JA. An adult health care-based pediatric to adult transition program for emerging adults with type 1 diabetes. Diabetes Educ 2017;43:87–96.10.1177/0145721716677098Search in Google Scholar PubMed

45. 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;163:1628–33.10.1016/j.jpeds.2013.07.031Search in Google Scholar PubMed

46. Chaudhry SR, Keaton M, Nasr SZ. Evaluation of a cystic fibrosis transition program from pediatric to adult care. Pediatr Pulmonol 2013;48:658–65.10.1164/ajrccm-conference.2011.183.1_MeetingAbstracts.A1114Search in Google Scholar

47. Essaddam L, Kallali W, Jemel M, Kandara H, Kammoun I, Hsairi M, et al. Implementation of effective transition from pediatric to adult diabetes care: epidemiological and clinical characteristicsa pioneering experience in North Africa. Acta Diabetol 2018;55:1163–9.10.1007/s00592-018-1196-xSearch in Google Scholar PubMed

48. Geerlings RP, Aldenkamp AP, Gottmer-Welschen LM, van Staa AL, de Louw AJ. Long-term effects of a multidisciplinary transition intervention from paediatric to adult care in patients with epilepsy. Seizure 2016;38:46–53.10.1016/j.seizure.2016.04.004Search in Google Scholar PubMed

49. Gérardin M, Pesle A, Pougheon-Bertrand D, Léger P, Vallet C, Bihouee T, et al. A quality improvement program for adolescents with cystic fibrosis: focus on psychosocial skills. Orphanet J Rare Dis 2018;13:7.10.1186/s13023-017-0747-5Search in Google Scholar PubMed PubMed Central

50. Levy-Shraga Y, Elisha N, Ben-Ami M, Boyko V, Lerner-Geva L, Ziv T, et al. Glycemic control and clinic attendance of emerging adults with type 1 diabetes at a transition care clinic. Acta Diabetol 2016;53:27–33.10.1007/s00592-015-0734-zSearch in Google Scholar PubMed

51. Paepegaey A, Coupaye M, Jaziri A, Menesguen F, Dubern B, Oppert J, et al. Impact of specialized pediatric and transitional care on endocrine, anthropometric, and metabolic parameters of adults with Prader-Willi Syndrome. Obes Facts 2018;11:299.Search in Google Scholar

52. Sequeira PA, Pyatak EA, Weigensberg MJ, Vigen CP, Wood JR, Ruelas V, et al. Let’s empower and prepare (LEAP): evaluation of a structured transition program for young adults with type 1 diabetes. Diabetes Care 2015;38:1412–9.10.2337/dc14-2577Search in Google Scholar PubMed PubMed Central

53. Weitz M, Heeringa S, Neuhaus TJ, Fehr T, Laube GF. Standardized multilevel transition program: does it affect renal transplant outcome? Pediatr Transplant 2015;19:691–7.10.1111/petr.12570Search in Google Scholar PubMed

54. Annunziato RA, Parbhakar M, Kapoor K, Matloff R, Casey N, Benchimol C, et al. Can transition to adult care for transplant recipients be improved by intensified services while patients are still in pediatrics? Prog Transplant 2015;25:236–42.10.7182/pit2015599Search in Google Scholar PubMed

55. Steinbeck KS, Shrewsbury VA, Harvey V, Mikler K, Donaghue KC, Craig ME, et al. A pilot randomized controlled trial of a post-discharge program to support emerging adults with type 1 diabetes mellitus transition from pediatric to adult care. Pediatr Diabetes 2015;16:634–9.10.1111/pedi.12229Search in Google Scholar PubMed

56. Awan AA, Niu J, Pan JS, Erickson KF, Mandayam S, Winkelmayer WC, et al. Trends in the causes of death among kidney transplant recipients in the United States (1996–2014). Am J Nephrol 2018;48:472–81.10.1159/000495081Search in Google Scholar PubMed PubMed Central

57. Bauman ME, Kuhle S, Bruce AA, Bolster L, Massicotte MP. The journey for adolescents and young adults with chronic conditions transitioning to adult care with successful warfarin management. Thromb Res 2016;141:183–8.10.1016/j.thromres.2016.03.019Search in Google Scholar PubMed

58. Egan EA, Corrigan J, Shurpin K. Building the bridge from pediatric to adult diabetes care: making the connection. Diabetes Educ 2015;41:432–43.10.1177/0145721715581666Search in Google Scholar PubMed

59. Skov M, Teilmann G, Damgaard IN, Nielsen KG, Hertz PG, Holgersen MG, et al. Initiating transitional care for adolescents with cystic fibrosis at the age of 12 is both feasible and promising. Acta Paediatr 2018;107:1977–2.10.1111/apa.14388Search in Google Scholar PubMed

60. Yerushalmy-Feler A, Ron Y, Barnea E, Nachum A, Matalon S, Dali-Levy M, et al. Adolescent transition clinic in inflammatory bowel disease: quantitative assessment of self-efficacy skills. Eur J Gastroenterol Hepatol 2017;29:831–7.10.1097/MEG.0000000000000864Search in Google Scholar PubMed

61. McDonagh JE, Southwood TR, Shaw KL, British Society of Paediatric and Adolescent Rheumatology. The impact of a coordinated transitional care programme on adolescents with juvenile idiopathic arthritis. Rheumatology (Oxford) 2007;46:161–8.10.1093/rheumatology/kel198Search in Google Scholar PubMed

62. Viele K, Berry S, Neuenschwander B, Amzal B, Chen F, Enas N, et al. Use of historical control data for assessing treatment effects in clinical trials. Pharm Stat 2014;13:41–54.10.1002/pst.1589Search in Google Scholar PubMed PubMed Central

63. Minden K, Niewerth M, Muther S. Berlin transition program: from adolescents to adults in rheumatology treatment. Z Rheumatol 2014;73:526–31.10.1007/s00393-014-1377-0Search in Google Scholar PubMed

Supplementary material

The online version of this article offers supplementary material (

Received: 2020-02-18
Accepted: 2020-04-01
Published Online: 2020-04-29

©2020 Johanna Becker, Esther Ravens, Lars Pape and Gundula Ernst, published by De Gruyter, Berlin/Boston

This work is licensed under the Creative Commons Attribution 4.0 International License.

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