Enabling good transition processes from child to adult medical care: A study protocol

*Camilla Ida Ravnbøl ^1,2* *Laura Altweck ^3,4* Silke Schmidt ^3,4 Lene Bistrup ⁵ Stefan Borgwardt ⁶ Sidse Marie Arnfred ⁵ Pia Jeppesen ⁷ Philipp von Bismarck ⁸ Julie Bork Nellegaard ⁹ Alexander Prehn-Kristensen ^10,11 Ada Colic ¹²

• ¹ Department of People and Technology, Roskilde University, Denmark,, Roskilde, Denmark
• ² The Research Department, Zealand University Hospital, Lykkebækvej 2, 4600, Køge, Denmark, Køge, Denmark
• ³ University of Greifswald, Greifswald, Germany
• ⁴ German Center for Child and Adolescent Health (DZKJ), partner site Greifswald/Rostock, Greifswald, Germany, Greifswald, Germany
• ⁵ Department of Children and Youth, Slagelse, NSR Hospital, Faelledvej 13, 4200 Slagelse, Denmark, Slagelse, Denmark
• ⁶ Department of Psychiatry and Psychotherapy, University Medical Center Schleswig-Holstein, Lübeck, Germany
• ⁷ Department of Child and Adolescent Psychiatry, Copenhagen University Hospital, Psychiatry Region Zealand, Smedegade 16, 4000 Roskilde, Denmark, Roskilde, Denmark
• ⁸ Clinic for Child and Adolescent Medicine, Universitätsklinikum Schleswig-Holstein, Kiel, Germany, Kiel, Germany
• ⁹ Trifork Public A/S, Europaplads 2, 8000, Arhus C, Denmark, Arhus, Denmark
• ¹⁰ Institute for Child and Adolescent Psychiatry, Center for Integrative Psychiatry ZIP gGmbH, Universitätsklinikum Schleswig-Holstein, Kiel, Germany, Kiel, Germany
• ¹¹ Institute of Psychology, Faculty of Psychology and Human Movement Science, University of Hamburg, Hamburg, Hamburg, Germany
• ¹² Department of Rheumatology, Zealand University Hospital, Lykkebækvej 2, 4600, Køge, Denmark, Køge, Denmark

Hundreds of patients each year transfer from child to adult medical care when they become adults. The transfer comes with a risk of interrupted treatment or improper treatment, potentially impacting young people’s physical and mental health, well-being, and future engagement in education, work, or social life. The Child to Adult Transition project (CAT) is a cross-country and interdisciplinary innovation and research project that aims to address this pertinent topic. Focusing on young people in rheumatology and mental health care in Denmark and Germany and CAT develops transition programmes to support young persons and their parents in the transfer from child to adult health care, while exploring their experiences of transition and the CAT programs. The CAT study has a longitudinal, mixed-methods study design, surveying young patients (age 15-25 years), their parents/guardians, and health-care professionals via interviews (individual or group), field observations, and/or online surveys. At baseline, interviews will be conducted with 24-68 adolescents and young adults, 24-68 parents/guardians, and 24-68 health-care professionals in both countries and across disciplines. 13-14 observations will be made in three settings and, at baseline, 400 adolescents and young adults will receive the survey. Interviews and surveys will be repeated after six and 12 months. The study will focus on topics such as everyday life as a young patient, transition experiences, somatic, and mental health, and quality of life. The CAT project period runs from January 2023 to December 2025. Recruitment to the CAT study is ongoing and all ethical approval have been obtained from the different departmental sites and ethical committees. The project combines different medical disciplines (child, adolescent and adult rheumatology and mental health), academic disciplines (medicine, anthropology and psychology) as well as countries (Germany, Denmark). It also combines person-groups (young persons, parents, professionals) and methods (interviews, observations, surveys). This approach provides new perspectives on the medical, psychological and anthropological aspects of the complex nature of the medical transfer. The findings will feed into the guidelines on transitional care, can also be used in other medical disciplines, and can be prepared as popular publications and other media enabling a broader audience to be reached.