Menstruation Management and Person-Centred Care in Congenital Adrenal Hyperplasia

Title: Menstruation Management and Person-Centred Care in Congenital Adrenal Hyperplasia

Authors: Megan Usipuik, Emma Amyot, Caroline Sanders

Author affiliation: University of Northern British Columbia

Introduction: Congenital adrenal hyperplasia (CAH) encompasses a group of inherited conditions affecting the adrenal glands through enzyme deficiencies. CAH may impact menstruation and fertility and often requires lifelong management through medication. However, health literacy resources for individuals with CAH are limited.

Aims: This review aimed to explore menstrual and medication management for individuals with CAH.

Methods: An integrative literature review was used to examine studies on CAH and menstruation published between 2005 and 2020.

Results: 30 articles met inclusion criteria (19 observational and 11 case studies). Individuals with CAH seem to reach menarche at a similar age to people without CAH. However, oligomenorrhea and amenorrhea appear to be common in this population. Treatment outcomes are mixed, with some studies showing achievement of regular menses and pregnancy, and others not. Poor outcomes were sometimes reported as being due to non-adherence or non-compliance despite a lack of evidence to indicate so.

Conclusion: We encourage a person-centred (PCC) approach to care which includes education and communication, and foregrounds individuals’ health and bodily autonomy.

Implications: Reliable and accessible information on menses management for individuals with CAH, as well as PCC and autonomy, are important aspects of overall health, wellbeing, and health literacy for this population.

Caroline Sanders is a registered nurse living in British Columbia for the last five years. A pediatric nurse for more than three decades – working in a clinical academic model. Having a background in clinical trials and qualitative research with children, families and youth, now more recently with adults.

Megan Usipuik is a Research Assistant with the University of Northern British Columbia as well as a Counsellor in the community. She has lived in northern British Columbia her entire life and is currently completing her Master's degree in Counselling.