Clinical Trial: Qualitative Research on Women With Congenital Adrenal Hyperplasia

Study Status: Completed
Recruit Status: Completed
Study Type: Observational

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

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 Summary: 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.
Sponsor: Lehigh University

Current Primary Outcome: Telephone interview consisting of approximately 7 open ended questions addressing domains of HRQL, Mental Health and Support [ Time Frame: 1 hour ]

Original Primary Outcome: Same as current

Current Secondary Outcome: Demographic Questionnaire [ Time Frame: 15 minutes ]

Original Secondary Outcome: Same as current

Information By: Lehigh University

Dates:
Date Received: November 15, 2007
Date Started: July 2007
Date Completion:
Last Updated: November 6, 2009
Last Verified: November 2009