Assessing the level of evidence on transfer and transition in young people with chronic conditions: protocol of a scoping review

Life-long specialized care is of the utmost importance to safeguard longevity as well as the quality of life in children diagnosed with a chronic condition (CC). Provision of life-long care, however, infers transfers to different settings in line with person’s development status. Young people with CC (10–25 years) will transfer care from a pediatric towards an adult-oriented care setting. As a transfer of care is associated with a change of care context, healthcare team, responsibilities, expectations, and roles, patients need to be prepared for this alteration. One type of preparatory intervention is the provision of transitional care. Transition prepares adolescents for the responsibilities associated with adult care and age through support, education, skills demonstration, and guidance. The past decades, increasing attention has been paid towards the concept of transfer and transition, both in clinical practice and research. Numerous consensus papers have been established, emphasizing the need for the establishment of a transition program for young patients with CC. To date, it remains, however, unclear what the overall level of evidence is on transfer and transition in this population. This scoping review aims to analyze and determine the level of evidence of published literature on transfer and transition of young people diagnosed with CC.

MEDLINE, CINAHL, Scopus, and Web of Science databases will be searched for relevant publications. Any publication in English, Spanish, German, or French, related to transfer and/or transition in young people with CC will be included. A three-staged approach will identify relevant papers, comprising systematic database searches, application of snowball method, and citation searching. Study selection will be performed through screening of titles/abstracts followed by a full-text assessment using a standardized selection form. Data extraction will be performed by two reviewers independently using a pilot-tested, standardized form. Descriptive statistics and content analysis will be applied to present the results. Bibliometric visualization techniques will be performed with VOS viewer®.

Our review will map the overall level of evidence of published literature on transfer and transition in young people with CC. It will provide guidance for future research initiatives, clinical practice, and policy makers.