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Congenital adrenal hyperplasia (CAH) encompasses a range of autosomal recessive inherited enzyme deficiencies that impact cortisol biosynthesis pathways. Although reported as a rare and lifelong disorder, it holds chronic health risks for individuals that can influence menstruation. The purpose of this environmental scan and integrative literature review was to identify health information pertinent to CAH and menstruation in order to inform health providers, increase patient education, and promote menstrual wellbeing. Analysis identified that while information about menses is reported, information about menstrual irregularities and their management in adolescents and women with CAH is uncertain. Furthermore, there is insufficient good quality research and knowledge on CAH and menstruation to inform health providers in their practice with this population. The need for individuals with CAH to access evidence-informed information is constrained by the state of current understanding and limitations in knowledge translation. The importance of having trustworthy and safe spaces in which to ask questions and draw on ethically sound, language appropriate, and evidence-informed material is paramount in supporting women's confidence and wellbeing across their lifetime. We encourage the building of stronger relationships between researchers, health providers, support groups and individuals to improve knowledge translation and dissemination regarding CAH and menstruation.

Informed decision-making and considerations of the child's best interest offer a starting place for building informed and lifelong discussions that promote the long-term interests and the well-being of individuals experiencing differences in sex development (DSD) or intersex traits. Parents require sufficient information and support to understand what "doing something and doing nothing" really means when learning about nonsurgical options. This may take the form of health literacy support, asking how parents are given access to meaningful and understandable information, as well as psychosocial support and psychological care. Timely psychological assessment and interventions that support informed decision-making actions are an essential aspect of holistic care for children and youth with DSD and their parents. Without actionable tools or approaches, parents cannot make informed decisions about their child's health and, as such, health literacy is a key attribute to aid decision making for both parents and children. As individuals with DSD become increasingly adept at building resourcefulness and gathering and applying knowledge about their bodies, limiting irreversible surgeries in childhood can afford wider life choices. To this end, an educated and informed comprehensive and helpful multidisciplinary group understands and embodies, as a whole team, the need for compassionate, emotionally supportive, and validating care in all interactions with parents of children and individuals with DSD. The paper draws on the primary author's experiences working with the charity, dsdfamilies, concluding with actionable approaches that include supporting personal knowledge through health literacy, examining team-based psychological care, and psychosocial approaches across the lifespan. [ABSTRACT FROM AUTHOR]

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 [ABSTRACT FROM AUTHOR]

Objectives: To: (1) complete an integrative literature review of transition studies that focus on individuals with intersex traits; (2) conduct an environmental scan of the current resources (practice guidelines, policies and procedures) used by healthcare providers working with Canadians with intersex traits; (3) investigate the experiences of Canadians with intersex traits in their healthcare transitions across the lifespan and (4) assess the understanding of healthcare providers about these transitions., Design: A qualitative prospective community participation study was conducted. It used mixed methods including an environmental scan and semistructured engagement sessions., Setting: The environmental scan examined resources available throughout Canada. The engagement sessions took place in British Columbia and Ontario, Canada., Participants: Sixteen participants were recruited. These included 13 individuals with intersex traits (a heterogeneous group of congenital conditions affecting the development of sex characteristics) and three caregivers., Methods: Mixed methods included an integrated literature review, environmental scan and qualitative approaches developed in collaboration with community partners., Results: The literature review identified gaps in transition care for individuals with intersex traits. The environmental scan uncovered no specific resources used by healthcare providers working with patients with intersex traits, though several general guidelines were used. Engaging providers in the study was problematic. Thematic analysis generated three main themes that emerged from the engagement sessions: (1) transition is a lifespan activity; (2) building personal agency is valuable and (3) well-being promotion is an application of health literacy., Conclusions: Transition resources for individuals living in Canada with intersex are scarce. Transitions happen across the lifespan with ownership of thought and actions seen as acts of personal agency. Health literacy skills and knowledge change with increased age, yet the primary source of knowledge often remained important in the individual's autobiographical self., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2022. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)