The transfer from pediatric to adult healthcare constitutes a vulnerable phase in the lives of chronically ill adolescents. Clinical instruments to assess the right time for transition are lacking outside of the English-speaking community. That is why a group of Austrian researchers have now adapted and pilot-tested a disease-neutral transition readiness assessment questionnaire (TRAQ) for German-speaking youth.
By Caroline Culen
Thanks to improved medical care, the survival rates for children with chronic diseases, such as cystic fibrosis, congenital heart diseases, and rare endocrine conditions, are on the rise. Still, adolescents with special health care needs frequently encounter challenges in transitioning from pediatric to adult medical care.
Since this phase been associated with increasing health risks for chronically ill young adults, experts agree that a “purposeful and planned movement” is essential. Lost to follow-up, no-shows for medical appointments, decreased adherence to medication regimens, and neglect of recommendations for adequate therapy are common issues that need to be prevented.
When is the right time to transition?
Usually, the release from pediatric care is scheduled for the age of 18, overlapping with many other upheavals in the lives of adolescents, such as leaving school or moving away from home. In recent years, researchers have thus been focusing on the concept of transition readiness.
To date, transition readiness assessment questionnaires (TRAQs) have been developed mainly for English speakers. However, the German-speaking population alone comprises approximately 100 million people. About 20% of the population are under the age of 18 and, according to estimates, 15 to 20% of these are chronically ill.
For this reason, clinicians in Vienna cross-culturally adapted the disease-neutral American TRAQ 5.0 for the German-speaking world. Their work, recently published in the Journal of Transition Medicine, presents a new instrument for assessing transition readiness – the generic TRAQ-GV-15. Fifteen questions screen for autonomy, health knowledge, and adherence concerning adolescents’ disease management, e.g. “Do you take medication correctly and on your own?” or “Do you manage your money and budget household expenses?”
“Our aim”, clinical psychologist Caroline Culen says, “is to give optimal support for young patients in the process of transition.” Therefore, screening for transition readiness beginning at the age of 14 will identify lacking competencies and pinpoint areas, such as disease knowledge or self-advocacy, where additional support is needed.
In addition to the clinical value of the questionnaire, the researchers are convinced of its applicability for the evaluation of transition processes and its use in longitudinal studies.
Read the original Open Access article here: Culen et al.: Be on TRAQ — Cross-cultural adaptation of the Transition Readiness Assessment Questionnaire (TRAQ 5.0) and pilot-testing of the German Version (TRAQ-GV-15), 25.07.2019.