Abstract
Introduction
Sex variations comprise a heterogeneous group of medical conditions. These include congenital
adrenal hyperplasia (CAH), androgen insensitivity syndrome, Turner syndrome, and more,
reportedly affecting approximately two percent of the population. These conditions can involve
lifelong management. However, no research has examined the experiences nor the healthcare
practices used with these individuals in their transitions through healthcare in Canada. Further, the
majority of research on healthcare transitions from other countries focuses on the pediatric to adult
care transfer, despite transitions taking place across the lifespan.
Aims Objectives Theory or Methods
Firstly, we aimed to investigate the current context of care for individuals with sex variations
through an environmental scan of the current care pathways and guidelines for transition used by
health providers. This included a search of 13 Canadian Children’s Hospital websites, a survey sent
to providers, and freedom of information requests submitted to these hospitals. Secondly, we
sought to learn from the experiences of individuals with sex variations and their families in
transitioning through care, along with their providers’ understandings of transition for this group.
Thus, we conducted engagement sessions in BC and Ontario applying a community-participatory
learning approach
Highlights or Results or Key Findings
Through the environmental scan, we found no hospital-specific resources used by healthcare
providers for guiding care transitions for individuals with sex variations. Our engagement sessions
consisted of in-person focus groups and virtual interviews with individuals from Ontario and British
Columbia. We also included secondary data from a small BC study with women with CAH.
Altogether, data from 17 individuals (15 with sex variations and two caregivers) was included.
Interviews highlighted three important themes: (1) transition is a lifespan activity – individuals
faced different healthcare challenges that required transition as they aged, (2) the building of
personal agency, and (3) wellness promotion and healing in this population. An additional output
from the study included the co-development of a small advisory group of adults identifying with sex
variations, involved in work around health education and consultation.
Conclusions
Canadian care guidelines for managing transition with sex variations are lacking. For individuals with sex variations there is little information to support individual health literacy and selfmanagement. There exists an opportunity for these individuals and their providers to begin building a visible network that can inform care delivery and policy.
Implications for applicability/transferability sustainability and limitations
A limitation of this study was failure to adopt inclusive terminology at study conception (e.g., our
website domain, dsdtransition.ca). We learnt that intersex or sex variation is preferred by the
community. We encourage use of inclusive terminology in healthcare and the co-development of
transition guidelines with Canadians with sex variations