Qualitative Research on Women With Congenital Adrenal Hyperplasia

Health-related Quality of Life, Mental Health and Psychotherapeutic Considerations for Women Diagnosed With a Disorder of Sexual Development: Congenital Adrenal Hyperplasia

Status

Completed

Phases

Unknown

Study type

Observational

Source

ClinicalTrials.gov

Registry ID

NCT00559078

Acronym

CAH

Enrollment

Registered

2007-11-16

Start date

2007-07-31

Completion date

2009-05-31

Last updated

2009-11-09

For informational purposes only — not medical advice. Sourced from public registries and may not reflect the latest updates. Terms

Conditions

Congenital Adrenal Hyperplasia

Keywords

Adrenal Hyperplasia, Congenital, Psychosexual Development, Sexual Development, Intersex, Qualitative, CAH, Interview, Disorder of Sex Development, Telephone, Quality of Life, Mental Health, Counseling

Brief summary

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.

Detailed description

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.

Interventions

OTHERInterview

Hour-long, qualitative, phone interview

Study design

Time perspective

CROSS_SECTIONAL

Eligibility

Sex/Gender

FEMALE

Age

25 Years to 55 Years

Healthy volunteers

Yes

Inclusion criteria

* 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 telephone interview

Exclusion criteria

* Non-classical or late-onset CAH

Design outcomes

Primary

Measure	Time frame
Telephone interview consisting of approximately 7 open ended questions addressing domains of HRQL, Mental Health and Support	1 hour

Secondary

Measure	Time frame
Demographic Questionnaire	15 minutes

Countries

United States

Outcome results

None listed

Source: ClinicalTrials.gov · Data processed: Feb 4, 2026