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

Lars Pape,Gundula Ernst

doi:10.1007/s00431-022-04385-z

Abstract

For consistent quality of treatment of young people with chronic health care needs, a structured health care transition (HCT) from pediatric medicine to adult medical care is essential. Currently, most countries have no guidelines on HCT based on systematic evidence research. To close this gap, guidance to support HCT was developed in Germany. Twenty-two experts in the management of adolescents and young adults with different chronic conditions and three patient representatives were invited to take part in the guideline group. Based on a systematic literature search recommendations for HCT were drafted. Where evidence was lacking, recommendations were developed using collective expert consensus. The consensus process was independently moderated using a Delphi approach. The final draft was reviewed and endorsed by all major German medical societies. The clinical recommendations provide guidance for all chronic somatic diseases. After assessment of HCT readiness, an individualized plan for HCT should be drawn up. Key elements here are a responsible coordinator, age-adapted patient education, involvement of caregivers, web-based interventions, joint visits, and a structured summary for the receiving physician. The aim is the gradual transfer of responsibility for disease management to the young person themselves. Conclusion: As only a few randomized controlled studies on HCT are available, evidence-based statements are possible for some but not all areas of HCT. However, this guideline may help to develop globally accepted standards. These standards should be established and implemented. The aim should be a reimbursement by individual national health systems to allow appropriate support for young people.What is Known:• Health care transition from pediatric to adult care is primarily organized in local settings, partly based on disease-specific guidelines.•There have been no national guidelines in Germany until now.What is New:• Here we present the general evidence-based guidelines of the German Association of Scientific Medical Societies for health care transition.• These might serve as a blueprint for further national or international health care transition guidelines.

Highlights

Communicated by Gregorio Paolo MilaniUniv. of Duisburg-Essen, Essen, Germany 3 Research and Teaching Unit Medical Psychology, HannoverMedical School, Hannover, GermanyIn Germany, 11.4% of girls and 16.0% of boys suffer from chronic diseases [1]
Health care transition from pediatric to adult care is primarily organized in local settings, partly based on disease-specific guidelines. There have been no national guidelines in Germany until now
We present the general evidence-based guidelines of the German Association of Scientific Medical Societies for health care transition

Summary

Introduction

Communicated by Gregorio Paolo MilaniUniv. of Duisburg-Essen, Essen, Germany 3 Research and Teaching Unit Medical Psychology, HannoverMedical School, Hannover, GermanyIn 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 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. European Journal of Pediatrics 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 addition to the medical aspects, this must include psychosocial and professional features [11]

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