Qualitative Research on Women With Congenital Adrenal Hyperplasia (CAH)
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.
|Study Design:||Time Perspective: Cross-Sectional|
|Official Title:||Health-related Quality of Life, Mental Health and Psychotherapeutic Considerations for Women Diagnosed With a Disorder of Sexual Development: Congenital Adrenal Hyperplasia|
- Telephone interview consisting of approximately 7 open ended questions addressing domains of HRQL, Mental Health and Support [ Time Frame: 1 hour ] [ Designated as safety issue: No ]
- Demographic Questionnaire [ Time Frame: 15 minutes ] [ Designated as safety issue: No ]
|Study Start Date:||July 2007|
|Study Completion Date:||May 2009|
Women diagnosed with CAH (either simple virilizing or salt-losing)
Hour-long, qualitative, phone interview
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.
Please refer to this study by its ClinicalTrials.gov identifier: NCT00559078
|United States, Pennsylvania|
|Bethlehem, Pennsylvania, United States, 18015|
|Study Director:||Matthew A Malouf, BA||Lehigh University Counseling Psychology|
|Principal Investigator:||Arpana G Inman||Lehigh University Counseling Psychology|