COCCOS study: Developing a transition program for adolescents with chronic conditions using Experience-Based Co-Design. A study protocol

• DOI: 10.1371/journal.pone.0298571
• Publication Date: 2024-04-05T16:19:25Z
• Authors: Natwarin Janssens; Lisa Van Wilder; Ann Van Hecke; Kim Van Hoorenbeeck; Karsten Vanden Wy...; Delphine De Smedt; Eva Goossens
• Keywords: Adult; Science & Technology; Adolescent; Science; Data Collection; Health Personnel; Q; CONSENSUS STATEMENT; R; CARE; PATIENT; Multidisciplinary Sciences; Study Protocol; Young Adult; Diabetes Mellitus, Type 1; YOUTH; Chronic Disease; Medicine and Health Sciences; Science & Technology - Other Topics; Medicine; Humans; Human medicine; Child; SYSTEM; Qualitative Research

Background During adolescence, adolescents and young adults (AYAs) are expected to transfer their care from the pediatric environment towards an adult-focused setting. To prevent an abrupt transfer of care, it is recommended to provide AYAs with chronic conditions an adequate transition program. The aim of this paper is to describe the study protocol for the development of a transition program for AYAs with common chronic conditions (COCCOS study), using the Experience-Based Co-Design (EBCD) methodology.

Methods and analysis A qualitative, participatory study is conducted in Flanders (Belgium). Study participants are AYAs (n≥15, 14–25 years old, diagnosed with type 1 diabetes, asthma, or obesity), their families, and healthcare providers (n≥15). The study is composed of eight EBCD stages: clinical site observations, in-depth interviews, trigger film, healthcare providers’ feedback event, AYAs’ feedback event, joint event, co-design workshops, and a celebration event. Photovoice will take place as a starting point of EBCD. Data will be analyzed using thematic analysis.

Results Data collection has started in January 2023 and is expected to be completed in May 2024. As of August 2023, over 15 clinical site observations have been conducted. A total of 18 AYAs, two parents, six healthcare providers have been enrolled and a total of 20 interviews have been conducted.

Conclusion Advancing transitional care is essential for tackling negative health outcomes. Applying the innovative participatory EBCD methodology will reveal key elements of transitional care for AYAs with common chronic conditions in the development of a person-centered transition program.

Practice implications Study findings will apply key elements of transitional care of AYAs with chronic conditions in the development of an adequate transition program.