This qualitative interview-based study will investigate the impact that living with
congenital adrenal hyperplasia has for women in the following areas: health-related quality
of life (HRQL), psychological health, and health-seeking behaviors.
Congenital Adrenal Hyperplasia is a chronic-illness requiring life-long treatment and is
caused by an inherited enzyme deficiency that leads to an overproduction of hormones
produced by the adrenal glands, which in turn, masculinizes the female genitalia before
birth. While the mechanisms by which CAH influences physiological development are
understood, the impact of this hormonal elevation on health-related quality of life (HRQL),
psychological health, and health-seeking behaviors is less clear. This study is guided by
three research questions: (1) how does CAH influence HRQL domains (physical, functional,
emotional and interpersonally), (2) how does CAH influence the mental health of women
diagnosed with CAH, and (3) how does CAH influence decisions to seek help from a counselor?
Semi-structured qualitative interviews will be conducted with women with CAH. Interviews
will be analyzed through the Consensual Qualitative Research (CQR) methodology.
- 46XX, Females
- Diagnosed by a physician with CAH (either simple-virilizing or salt-losing types)
- Willing to complete a brief demographic questionnaire and participate in an hour long
- Non-classical or late-onset CAH