Health care transition from pediatric to adult care: an evidence-based guideline

In Germany, 11.4% of girls and 16.0% of boys suffer from chronic diseases [1]. The health care transition (HCT), i.e., the preparation and follow-up of the transfer from pediatric to adult medicine, poses a challenge for these adolescents. Up to 40% of adolescent patients lose access to special care during the HCT from pediatric medicine to adult medical care [2]. There is a danger of undersupply of medical care and thus a risk to individual health from, for example, an increased rate of transplant losses and renewed dialysis in patients after kidney transplantation [3], reduced use of immunosuppressants in patients after liver transplantation [4], and a lack of specialized care in many young people with congenital heart defects [5], juvenile idiopathic arthritis [6], and diabetes [7], all of which lead to a significant impact on patient safety and health care costs [8].

In order to avoid such negative consequences for both the individual and for health-related expenditure, a structured and planned HCT process is necessary, as described in international recommendations on HCT [9, 10]. In addition to the medical aspects, this must also include psychosocial and professional features [11].

In the last few years, international consensus statements for a variety of diseases have been published [12‐15], and both outcomes [16, 17] and models for research have been defined [18, 19]. There is currently a lack of standards for the HCT process and secure funding for it based on systematic evidence research [11, 20].

To close this gap, we developed an evidence-based guideline, which aims to create guidance for clinicians and other health professionals in their daily clinical practice when treating adolescents and young adults. In contrast to disease-specific consensus statements, it relates to all chronic somatic diseases.

The guideline was developed in four stages according to the recommendations of the German Association of the Scientific Medical Societies (https://​www.​awmf.​org/​fileadmin/​user_​upload/​Leitlinien/​AWMF-Regelwerk/​AWMF-Guidance_​2013.​pdf). This recommendation includes a complete risk bias assessment. Stage 1: Between 2018 and 2019 a systematic literature search was carried out by independent researchers using the PRISMA checklist to evaluate bias and the GRADE system to grade recommendations. The procedure and the results of the systematic review have already been published separately [21, 22]. The online supplements of these publications include tables describing the exact assessment of each study and possible bias, as well as a table explaining why bias has led to certain studies being excluded from the analysis. Overall, the 40 included studies assessed the outcomes of 3333 patients aged 12–28 years. Stage 2: Two coordinators from the Society for Transition Medicine (LP, GE) drafted a set of recommendations based on this systematic literature search. Stage 3: The evidence-based recommendations were presented as a word document to 20 additional experts in the management of adolescents and young adults with different chronic conditions and three members of self-help groups (Supplementary Table 1) and these recommendations were then discussed in an independently moderated workshop. The 19 experts have each been selected and named by the participating societies. Where evidence for important aspects of the HCT was lacking, the guideline group formulated additional recommendations based on collective expert opinion in the workshop. The guideline group was then invited to agree/disagree with the draft recommendations in an in-person discussion and by voting. Where there was disagreement, the coordinators reviewed the comments and made any necessary amendments. Stage 4: The revised guidelines were presented as a new word document and there were online re-votes for recommendations; 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 are outlined in Table 1.

The final draft was reviewed and endorsed by all major German medical societies and was accepted by the German Association of the Scientific Medical Societies after a review and a submission of a revised version that completely fulfilled the recommendations of the association on March 17, 2021.

National German cross-disease recommendations for important HCT factors for which only partial evidence exists were established in this guideline with the broad participation and agreement of specialist societies. The recommendations seem consistent with published disease specific-recommendations [9, 10, 12‐16, 20]. The novelty of our guideline is the cross-disease aspect, defining an HCT standard. Interestingly, there is a strong consensus for almost all recommendations despite often low levels of evidence. This underlines the fact that many strategies for HCT have been similarly established worldwide without complete evidence. In several areas where transition procedures have been established, it might even be contradictory to perform RCTs as it would be unethical to have a control group who would not receive an adequate HCT.

The recommendations will serve as a foundation for HCT in Germany for frequent as well as rare diseases. Obviously, disease-specific aspects will have to be added and there must be additional recommendations for young people with multiple disabilities, non-autonomous patients, and those with psychiatric diseases. The applicability will also be based primarily on the implementation of national HCT structures in Germany [11] and the reimbursement of the different elements of HCT. In addition, HCT should become a supplementary subject of education and board certification in pediatrics and adolescent health. To improve the quality of HCT in future, milestones for a stepwise implementation of the guidelines described here must be defined and controlled, and a clearly defined quality check for HCT will have to be implemented and linked to complete health-care reimbursement in this age group. HCT can be even further improved by providing an additional focus for the development of self-management skills, interventions to improve mental health, reduction of fear of the unknown related to the switch to adult care, and easier access to appropriately trained adult providers.

The recommendations of this guideline may serve as a blueprint for the national HCT guidelines of other countries. The recommendations given in this manuscript focus on Germany but most of them are broadly accepted worldwide. They can only be implemented if there is adequate funding to cover time, staff, and structures within the HCT services of national health systems. The implementation in other countries will depend on the structure of the individual national health care system and might be faster in those countries with a centralized system.

These guidelines have important limitations. Most of the actual recommendations for the HCT of young people are disease specific and not evidence based. Only a few high-quality studies, i.e., RCTs, are available on HCT [21, 22], so that evidence-based statements are possible for some, but not all, areas. Only three adult patient representatives and no adolescents/young adults themselves were involved in the Delphi consensus process. This could have strengthened the quality of the guidelines. The guidelines exclude mental health conditions, neurodevelopmental conditions, and psychiatric diseases as the corresponding German societies plan to develop their own guidelines on HCT. Due to the literature research process of the underlying review articles [21, 22] in this guideline, information on additional transition interventions, such as that from the literature on self-management, have not been considered here.

This guideline, partly based on evidence, may help to develop globally accepted standards for HCT that should be established, implemented, and properly funded.