Challenges in Transition of Care for People With Variations of Sex Characteristics in the European Context

Abstract

Objective Variations of sex characteristics (VSC) are atypical genetic, hormonal, gonadal and anatomical sex traits that require holistic medical management. The Chicago Consensus statement 2006 introduced the requirement that multidisciplinary teams organise the transition of care from pediatric to adult services. Yet, the evidence that the transitional care is in place is scarce. The aim of this paper is to examine the implementation of transition of care for people with VSC. Method Seven focus groups were conducted with health care professionals and peer support groups in care teams in Central, Northern and Western Europe. The data from the focus groups were examined using reflexive thematic analysis. Results The participants in the study stated that the transition of care has been implemented in the last two decades. The quality of care depends on available resources and variation of sex characteristics. However, there are significant hurdles to adequate transition of care as there is lack of time and resources. Lack of adult care providers and psychosocial support leaves young adults and adults with VSC navigating the health care system often alone. Conclusion The outcome of the study shows that the transition of care is organized through the department of pediatric endocrinology. The quality of care varies due to resources and variation. Lack of adult specialists and psychosocial support represent the biggest obstacle for young adults and adults to navigate the healthcare system and for the improvement in provision of healthcare to adults, especially psychosocial support.