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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.
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| Label | Type | Description | Intervention Names |
|---|---|---|---|
| CAH | Women diagnosed with CAH (either simple virilizing or salt-losing) |
|
| Name | Type | Description | Arm Group Labels | Other Names |
|---|---|---|---|---|
| Interview | Other | Hour-long, qualitative, phone interview |
|
| Measure | Description | Time Frame |
|---|---|---|
| Telephone interview consisting of approximately 7 open ended questions addressing domains of HRQL, Mental Health and Support | 1 hour |
| Measure | Description | Time Frame |
|---|---|---|
| Demographic Questionnaire | 15 minutes |
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Inclusion Criteria:
Exclusion Criteria:
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Women diagnosed with CAH (either simple-virilizing or salt-losing types) living in the United States
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| Name | Affiliation | Role |
|---|---|---|
| Matthew A Malouf, BA | Lehigh University Counseling Psychology | Study Director |
| Arpana G Inman | Lehigh University Counseling Psychology | Principal Investigator |
| Facility | Status | City | State | ZIP | Country | Contacts |
|---|---|---|---|---|---|---|
| Lehigh University | Bethlehem | Pennsylvania | 18015 | United States |
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| ID | Term |
|---|---|
| D000312 | Adrenal Hyperplasia, Congenital |
| D050090 | Ovotesticular Disorders of Sex Development |
| D012734 | Disorders of Sex Development |
| D000092862 | Psychological Well-Being |
| ID | Term |
|---|---|
| D047808 | Adrenogenital Syndrome |
| D014564 | Urogenital Abnormalities |
| D052776 | Female Urogenital Diseases |
| D005261 | Female Urogenital Diseases and Pregnancy Complications |
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| ID | Term |
|---|---|
| D007407 | Interviews as Topic |
| ID | Term |
|---|---|
| D003625 | Data Collection |
| D004812 | Epidemiologic Methods |
| D008919 | Investigative Techniques |
| D017531 | Health Care Evaluation Mechanisms |
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| D000091642 | Urogenital Diseases |
| D052801 | Male Urogenital Diseases |
| D000013 | Congenital Abnormalities |
| D009358 | Congenital, Hereditary, and Neonatal Diseases and Abnormalities |
| D030342 | Genetic Diseases, Inborn |
| D043202 | Steroid Metabolism, Inborn Errors |
| D008661 | Metabolism, Inborn Errors |
| D008659 | Metabolic Diseases |
| D009750 | Nutritional and Metabolic Diseases |
| D000307 | Adrenal Gland Diseases |
| D004700 | Endocrine System Diseases |
| D006058 | Gonadal Disorders |
| D010549 | Personal Satisfaction |
| D001519 | Behavior |
| D011787 | Quality of Health Care |
| D017530 | Health Care Quality, Access, and Evaluation |
| D011634 | Public Health |
| D004778 | Environment and Public Health |