Transition experiences of young adults with perinatal HIV in the Netherlands

The process of transition from paediatric to adult care is a crucial step towards self-management of healthcare for young adults with chronic health conditions. In the Netherlands, the On Your Own Feet program offers an extensive framework for supporting optimal transition. In this national study, we aimed to evaluate the transition experiences of young adults with perinatal HIV who transferred from a paediatric to an adult HIV treatment centre.

Participants who transferred to adult care less than six years ago received questionnaires on transition experiences, the validated On Your Own Feet - Transition Experiences Scale (OYOF-TES), and demographics. Demographic and healthcare-related variables were collected from patients' medical files. We explored correlations between OYOF-TES scores and other variables.

Of 44 participants, 29 responded (65.1 %). Their median age was 20 (IQR 19-23). Overall, high scores were found on the subscales 'Reception in adult care' (median 4.8, IQR 4.0-5.0), 'Alliance paediatric and adult care' (median 4.0, IQR 3.4-4.4), and 'Transfer readiness' (median 4.2, IQR 3.8-4.8). The lowest scores were found in the subscales 'Preparation for transfer' (median 3.3, IQR 2.7-4.0) and 'Youth involvement' (median 3.5, IQR 2.5-4.5). Higher scores on transition experiences were correlated with younger age and female sex, while lower scores were correlated with those of whom one or both biological parents died during childhood.

Transition experiences in our population were positive. Younger participants felt better prepared for the transfer, which indicates that transition is increasingly becoming a joint effort between young adults and healthcare professionals and that pathways accustomed to individual needs improve the transition experience for young adults with perinatal HIV.