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

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.

Gaps in transition readiness measurement: a comparison of instruments to a conceptual model

“…When AYAs are not prepared to navigate the adult care setting and manage their care with less involvement from their parents or caregivers, gaps in continuity of recommended care [ 6 ], [ 7 ], [ 8 ] and clinical deterioration [ 9 ], [ 10 ], [ 11 ], [ 12 ], [ 13 ], [ 14 ], [ 15 ] can occur. To avoid these negative consequences, it is recommended that transition planning and transfer to adult care be tailored to an individual AYA’s readiness, rather than based on age alone [ 16 , 17 ].…”

Psychosocial consequences of surviving cancer diagnosed and treated in childhood versus in adolescence/young adulthood: A call for clearer delineation between groups

“…Finally, the organization of care according to age at diagnosis is a barrier to a clear pathway for support of young survivors. It is important to overcome differences in treatment settings (pediatric vs adult care settings) and care for survivors by applying key elements of transition care, such as age‐adapted patient education, involvement of caregivers, a responsible coordinator, digital interventions, and the provision of a treatment summary 22 . In addition, the following would aid progress in the field: Learning from the AYA community—bridging care between pediatrics and adult care; Developing sustainable models of collaborative working between pediatrics and adult care; Focusing on risk‐adaptive models; Providing additional educational opportunities; Increasing prioritization of survivorship research and need to follow late effects; Engaging more fully with survivors/patients; Exploring empty episodes of care and how young people engage with survivorship care; Considering differences in health care systems; Emphasizing the importance of transition programs; and Empowering survivors to advocate for themselves. …”

“…It is important to overcome differences in treatment settings (pediatric vs adult care settings) and care for survivors by applying key elements of transition care, such as age-adapted patient education, involvement of caregivers, a responsible coordinator, digital interventions, and the provision of a treatment summary. 22 In addition, the following would aid progress in the field:…”

Facilitating the transition from paediatric to adult care in endocrinology: a focus on growth disorders

“…Currently, there is no standardized timing, structure, or process of healthcare transition (HCT) from paediatric to adult-centred healthcare for patients with such disorders. Various strategies to facilitate HCT for adolescents and young adults (AYA) have been studied and published [1][2][3][4][5]6 & ], including those for AYAs with endocrine conditions such as type 1 diabetes mellitus (T1D) and pituitary disorders [7][8][9]. However, limited information is available regarding approaches to HCT for AYAs with COGDs.…”