The guideline was developed in four stages. Two coordinators from the Society for Transition Medicine (LP, GE) drafted a set of recommendations based on a systematic literature search, which was carried out by independent researchers between 2018 and 2019. The procedure and the results of the systematic review have already been published separately [21, 22]. The 40 included studies together assessed the outcomes of 3333 patients aged 12–28 years.
These evidence-based recommendations were presented to 19 additional experts in the management of adolescents and young adults with different chronic conditions and four members of self-help groups (Table 1) and were discussed in an independently moderated workshop. Where evidence for important aspects of the HCT was lacking, the guideline group formulated additional recommendations based on collective expert opinion. The guideline group was then invited to agree/disagree with the draft recommendations. Where there was disagreement, the coordinators reviewed the comments and made any necessary amendments. There were re-votes for recommendations, and this process continued until consensus was achieved on nearly all final recommendations using a Delphi approach. The grading of evidence, strength of recommendation and consensus is outlined in Table 2.
Table 1
Members of the guideline group
Leading professional society
|
Gesellschaft für Transitionsmedizin (GfTM)
[Society of Transition Medicine]
|
Dr. Gundula Ernst, Hannover
Prof. Dr. Lars Pape, Essen
|
Participating professional societies / associations / experts
|
Arbeitsgemeinschaft Pädiatrische Diabetologie
[Society of Pediatric Diabetology]
|
Dr. Thomas Kapellen, Bad Kösen
|
Deutsche Gesellschaft für Epileptologie (DGfE)
[German Society of Epileptology]
|
Dr. Frank Bösebeck, Rothenburg
Dr. Sarah von Spiczak, Kiel
|
Deutsche Gesellschaft für Innere Medizin (DGIM)
[German Society of Internal Medicine]
|
Prof. Dr. Britta Siegmund, Berlin
|
Deutsche Gesellschaft für Kinder- und Jugendmedizin (DGKJ)
[German Society of Pediatrics and Adolescent medicine]
|
Dr. Corinna Grasemann, Bochum
Prof. Dr. Hans Georg Koch, Braunschweig
|
Deutsche Gesellschaft für Kinderchirurgie
[German Society of Pediatric Surgery]
|
Prof. Dr. Jens Dingemann, Hannover
|
Deutsche Gesellschaft für Kinderendokrinologie und -diabetologie (DGKED)
[German Society of Pediatric Endocrinology]
|
Dr. Corinna Grasemann, Bochum
|
Deutsche Gesellschaft für Nephrologie
[German Society of Nephrology]
|
Prof. Dr. Lars Pape, Essen
|
Deutsche Gesellschaft für Palliativmedizin
[German Society of Palliative Care]
|
Christian Stellhorn, Wedemark
|
Deutsche Gesellschaft für Pneumologie und Beatmungsmedizin
[German Society of Pulmonology]
|
Dr. Christina Smaczny, Frankfurt
|
Deutsche Gesellschaft für Psychosomatische Medizin und Ärztliche Psychotherapie
[German Society of Psychosomatics and Psychotherapy]
|
Dr. Frank Vitinius, Köln
|
Deutsche Gesellschaft für Rheumatologie (DGRh)
[German Society of Rheumatology]
|
Dr. Susanne Schalm, München
|
Deutsche Gesellschaft für Sozialpädiatrie und Jugendmedizin (DGSPJ)
[Society of Social Pediatrics]
|
Dr. Helmut Peters, Mainz
|
Deutsches Kollegium für Psychosomatische Medizin (DKPM)
[German College of Psychosomatics]
|
Dr. Frank Vitinius, Köln
|
Gesellschaft für Kinder- und Jugendrheumatologie (DKJR)
[German Society of Pediatric Rheumatology]
|
Dr. Kirsten Minden, Berlin
|
Gesellschaft für Neuropädiatrie (GNP)
[German Society of Neuropaediatrics]
|
Dr. Ulrich Brandl, Jena
Dr. Regina Trollmann, Erlangen
|
Gesellschaft für Pädiatrische Nephrologie (GPN)
[German Society of Pediatric Nephrology]
|
Prof. Dr. Lars Pape, Essen
|
Gesellschaft für pädiatrische Onkologie und Hämatologie (GPOH)
[German Society of Pediatric Hematology and Oncology]
|
Prof. Dr. Holger Cario, Ulm
Dr. Gabriele Escherich, Hamburg
|
Berliner Transitionsprogramm (BTP)
[Berlin Transition Program]
|
Dr. Silvia Müther, Berlin
|
Kompetenznetz Patientenschulung im Kindes- und Jugendalter (KomPaS)
[Competence Net Patient Education]
|
Dr. Gundula Ernst, Hannover
|
Translate Namse
[National Association for Rare Diseases]
|
Dr. Corinna Grasemann, Bochum
|
TRANSNephro
[Transition in Nephrology]
|
Dr. Jenny Prüfe, Essen
|
Patientenvertreter - KEKS
[Patient focus group Esophageal Atresia]
|
Stephan Jechalke, Stuttgart
|
Patientenvertreter - Bundesvereinigung Jugendliche und Erwachsene mit angeborenen Herzfehlern (JEMAH)
[Patient focus group inborn heart diseases]
|
Roland Keuchen, Berlin
|
Patientenvertreter – Deutsche Rheuma-Liga Bundesverband
[Patient focus group Rheumatology]
|
Monika Mayer, Bonn
|
Table 2
Grading of evidence, strength of recommendation and consensus
Level of Evidence
|
Explanation
|
Ia
|
Evidence from meta-analyses from multiple randomized controlled trials.
|
Ib
|
Evidence based on at least one randomized, controlled study.
|
IIa
|
Evidence based on at least one well-designed, but not randomized and controlled study.
|
IIb
|
Evidence based on at least one well-designed quasi-experimental study.
|
III
|
Evidence based on well-designed, non-experimental descriptive studies such as comparative studies, correlation studies or case-control studies.
|
IV
|
Evidence based on reports from expert committees or expert opinions or clinical experience of recognized authorities.
|
V
|
Evidence based on case series or multiple expert opinions.
|
Level of Recommendation
|
Description
|
Syntax
|
A
|
Strong recommendation
|
Should / should not
|
B
|
Recommendation
|
Should / should not
|
0
|
Open recommendation
|
Can be considered
/ can be waived at
will
|
Strong consensus
|
Consensus
|
Majority approval
|
No consensus
|
Approval > 95%
|
Approval >75-95%
|
Approval >50-75%
|
Approval <50%
|
The final draft was reviewed and endorsed by all major German medical societies and was accepted by the Association of the Scientific Medical Societies in Germany on March 17, 2021.
Recommendations for HCT with evidence
For the HCT process, an individualized plan should be created that defines and schedules the individual aspects of transition (Level of Evidence II, Level of Recommendation B, strong consensus).
An HCT plan was tested as a central measure in two studies. A quasi-experimental study [23] found that young people with congenital heart defects had a faster and more reliable route to specialized adult care after using a planning tool than was the case before introducing this resource. In addition, they showed a more stable complaint score over the transition period than the comparison group. Weitz et al. [24] found better kidney function and fewer rejection episodes after the introduction of a structured HCT plan that took into account the individual situation of young people after kidney transplantation.
In the control group of the only randomized controlled trial (RCT) with a focus on the route to specialized care [25], no difference was found in young people with type 1 diabetes in the first year after transfer. In the second year, however, there was a significantly higher rate of follow-up appointments and specialized care.
The willingness and ability to make the HCT should be recorded in a detailed clinical discussion (Level of Evidence I, Level of Recommendation A, strong consensus).
An assessment of transition readiness combined with individual training was tested in an RCT in adolescents with congenital heart defects [26, 27]. Compared to the control group receiving standard care, the intervention group showed significant improvements in disease knowledge, self-management and transition-specific skills after six months. Additionally, they made an appointment with an adult cardiologist more quickly. Other studies that recorded transition readiness are not very meaningful due to their small sample size [26, 27, 28].
The time of transfer should take into account the characteristics of the disease and the patient and should not be rigidly linked to the 18th birthday milestone (Level of evidence II, Level of Recommendation B, strong consensus).
A systematic review of reviews provides moderate evidence that transfer of young people in late adolescence or early adulthood can improve transition outcomes and patient satisfaction [29]. But none of our included studies examined the flexibility of transfer time as a sole intervention. In most studies, the timing was linked to individual transition planning [24, 30, 31]. In other studies, the time of transfer was determined by a transition coordinator [32]. After such tailored treatment adolescents after kidney transplantation showed better kidney function and fewer rejections (24). Cole and co-workers observed better drug adherence, greater use of the first appointment, fewer operations, and fewer hospital admissions in the first two years after transfer in young patients with inflammatory bowel disease [30]. In young people with type 1 diabetes the HbA1c value improved significantly [31]. Jensen and colleagues showed a higher rate of successful HCT in adolescents with juvenile idiopathic arthritis after complex care coordinated by a social worker [32].
The HCT process should include patient education for the patient and, if necessary, his or her parents on relevant aspects of the disease and transfer (Level of Evidence Ib, Level of Recommendation A, strong consensus).
Training measures as the main intervention for adolescents were examined in several studies. For example, adolescents with congenital heart defects were informed about their disease, potential risks and HCT after an assessment of transition-specific skills in a one- or two-hour individual training course [26, 27]. Both RCTs showed positive effects on disease knowledge, self-management and transition-specific skills, as well as on the use of doctors’ appointments in the second study. For a day and a half youth-specific group education program, two prospective quasi-experimental studies also showed positive effects on patient activation, transition-specific knowledge and skills, but not on health-related quality of life [33, 34, 35].
The HCT process should have an interdisciplinary design (Level of Evidence II, Level of Recommendation B, strong consensus).
For young people with epilepsy, Geerlings et al. [36] set up an HCT consultation hour with a multidisciplinary team consisting of neurologists, neuropsychologists, social workers and school / career counselors. After one year it was found that participation in the intervention was an important predictor of improvement in medical and academic outcomes. Yerushalmy-Feler and colleagues implemented a multidisciplinary HCT consultation hour for young people with inflammatory bowel disease, which offers adolescents the opportunity to speak with a pediatrician, an adult gastroenterologist, a nurse and a psychologist. In the prospective pre-post comparison, a significant increase in self-efficacy could be demonstrated [37]. In more complex interventions, multidisciplinary teams were used to support the transition process, for example, together with training courses or transition coordinators [8, 30].
A structured portable health summary on the previous course of the disease with medical and psychosocial content as well as treatment-relevant preliminary findings should be created for the patient and for further treatment (Level of Evidence II, Level of Recommendation B, strong consensus).
Transition summaries have been used as one aspect of very complex interventions [8], together with patient education programs [26] or a transition coordinator [4]. Accordingly, the effect of a structured health summary or a patient passport is difficult to assess. In the study by Essaddam et al. [31] it was part of a joint transition meeting for adolescents with type 1 diabetes. A patient card was filled out, which contained information on the patient’s history, medication, and complications, as well as providing a psychosocial background and professional perspective. In the prospective study, 75% of the participants showed metabolic improvements one year after the transfer.
A responsible contact person should accompany the HCT (Level of Evidence II, Levels of Recommendation B, strong consensus).
The effect of a responsible contact person for the HCT was investigated in three controlled, but not randomized, studies. A social worker accompanied young people with juvenile ideopathic arthritis throughout the entire transition period [32]. In the intervention group, the rate of adolescents successfully transferred adult care was significantly higher than among adolescents who refused to participate in the program and who acted as a control group (42% vs. 23% with at least two doctor’s appointments in the follow-up period / 15% vs. 58% without an appointment). In the only RCT in adolescents with diabetes, there were no demonstrable effects from telephone contact with a coordinator. Three short phone calls were made to the young people, who were asked about their well-being, any special events and problems in the transition process [38].
In order to improve adherence to treatment and appointments, low threshold offers should be used through websites, apps, SMS, email and / or telephone, if accessible (Level of Evidence II, Level of Recommendation B, strong consensus).
Three RCTs were found on the use of digital media to promote self-management in young patients [39, 40, 41], and one RCT on the use of telephone support [38].
Short telephone calls did not reveal any additional effects [38]. With the web-based schedules, the young people went through structured programs with weekly modules. All programs had additional personal support via telephone, SMS or chat. The adolescents with hemophilia who were managed in this way had higher scores for disease-related knowledge, self-efficacy, and transition readiness than control subjects [40]. Huang et al. found a significant improvement in self-management and self-efficacy in adolescents with various chronic diseases [41].
In the case of younger adolescents, parents should be included in the transition process. In the case of patients with cognitive impairments, the involvement of parents / permanent caregivers is mandatory (Level of Evidence III, Level of Recommendation A, strong consensus).
For ethical reasons, studies in adolescents that do not involve parents are not possible. In a longitudinal observational study, centers with different grades of parental involvement were compared with one another. One year after the transfer, it was found that the involvement of parents was strongly associated with the psychological well-being of the patient and with their satisfaction with the health services [42]. In the program by Menrath et al. a youth-specific education program was expanded by the addition of a half-day training course for parents. Parents and adolescents were very satisfied with this course and the adolescents showed higher values for patient activation, transition-specific knowledge and competence after the workshop than controls [33]. When the workshop was carried out without parental involvement, the value of transition-specific competence rose less sharply [34].
The offer of a joint consultation or case conference in which pediatricians and adult physicians who provide further treatment are involved, can be considered (Level of Evidence III, Level of Recommendation 0, strong consensus).
Many studies test joint visits or case conferences mostly in interdisciplinary teams. These include intervention studies using a single group design, sometimes with historical control groups for comparison [43, 44, 45, 46]. In some cases, these are also retrospective comparisons of different groups [21, 36, 47]. Most of these studies found positive effects. Harden et al. examined a small group of kidney-transplanted adolescents (n = 21) and observed fewer organ losses in the group that took part in the structured transition program than in adolescents who were under care before the program was introduced (0 vs. 6) [43]. Levy-Shraga et al. found significantly improved metabolic control in adolescents with diabetes and fewer diabetic ketoacidoses after the introduction of a joint clinic [44].
To support the transition process, individual measures should not be used in isolation; instead, several of the elements described should be combined in a meaningful way (Level of Evidence II, Level of Recommendation B, strong consensus).
Almost all the studies were found to use several elements to support the HCT process, which can be explained by the interlinking of various interventions. Most studies that combined several HCT elements were able to show positive effects. In the few studies that only tested single elements [34, 38, 40, 47], this was only true in one case out of four.
Recommendations for HCT based on expert consensus
Conversations about transition should start early and in line with development of the adolescent (Level of Evidence IV, Level of Recommendation B, strong consensus).
From the beginning of adolescence, but no later than their 16th birthday, adolescents and, if necessary, their parents are advised on transition-related topics in consultation hours and / or in separate education courses. An early start is necessary to pave the way for the transfer and to initiate any necessary measures.
In the HCT process, topics relevant to young people, such as sexuality, family planning, sleep-wake rhythms, consumption of alcohol, nicotine and illegal substances and their interaction with the disease and its therapy, should be addressed by the treatment team (Level of Evidence IV; Level of Recommendation B, strong consensus).
The majority of adolescent patients have the same interests and needs as their healthy peers. However, they often find it difficult to reconcile their desire for a youthful lifestyle with the requirements of disease management. With a view to healthy psychosocial development, as well as enjoyment of a normal life, young people should be advised on how their needs can best be reconciled with their disease.
Screening for psychological stress and abnormalities should be part of the routine treatment for chronic illnesses (Level of Evidence IV, Level of Recommendation B, strong consensus).
In adolescence, young people become fully aware of the chronic nature and possible consequences of their disease. In addition, disease management and onerous disease-related restrictions can easily lead to frustration and self-doubt. The treatment team should sensitively explore insecurities about self-management, disturbed eating behavior, depression and worries about the future, in addition to adherence problems and therapy fatigue.
Sufficient time should be planned for detailed HCT appointments within the pediatric service but also with the receiving doctor (Level of Evidence IV, Level of Recommendation B, strong consensus).
The counseling and training of the young patient and his parents requires a considerable amount of time within the care service, and it is therefore necessary to plan for longer appointments. It must be possible to account for this additional work appropriately.
The responsibility for disease management should gradually be transferred from parents to adolescents (Level of Evidence IV, Level of Recommendation B, strong consensus).
In order to avoid excessive demands and to slowly prepare both sides for their new roles, the responsibility for disease management should gradually be transferred from the parents to the adolescent. This process must be adapted to the developmental and cognitive capabilities of the adolescent and the complexity of the therapy.
Advice on professional and social issues related to the disease should be offered to young people (Level of Evidence IV, Level of Recommendation B, strong consensus).
Whether he or she is entitled to benefits under social law should be discussed with the young person, if appropriate. Current social law benefits must be checked and reapplied for. The patient should know contact points for further information.
Young people should be made aware of relevant self-help associations and patient organizations (Level of Evidence IV, Level of Recommendation B, strong consensus).
Self-help associations and patient organizations provide a variety of programs that strengthen HCT structures and processes. They advise both those affected and health care professionals, provide information specific to the disease, create platforms for the exchange of information, and offer individual support. In doing so, the personal competence of those affected is strengthened.