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

Malouf, Matthew A.; Inman, Arpana G.; Carr, Amanda G.; Franco, Jill; Brooks, Lindsey M.

doi:10.1155/2010/253465

International Journal of Pediatric Endocrinology

Table 1 Representation of cases within each category and subcategory across each domain.

Domain/Category/Subcategory	Frequency
Domain 1: Physical functioning	general
Normal functioning	general
Able to function well with no or minimal CAH-related restrictions	typical
Normal functioning except for having to take medication daily	variant
Sexual functioning	general
Increased risk for sickness	general
Medication	general
General medical regimens	typical
Stress dosing	typical
General side effects from medication	typical
Weight concerns from medication	typical
Physical side effects of CAH	typical
Adrenal Crises and hospitalizations	typical
Reproductive functioning	variant
Domain 2: Psychological functioning	general
Processes involved in understanding or becoming aware of CAH	general
Understanding of identity	general
Normal	variant
Different	variant
Emotions and cognitions related to CAH	general
Negative	general
Positive	variant
Mental health concerns	typical
Sexuality	variant
Gender identity and role	variant
Concentration and learning issues	variant
Domain 3: Interpersonal relationships and processes	general
Disclosure and others' awareness and knowledge of CAH	general
Impact of CAH on others	general
Interaction of CAH's genetic component with relationships	general
Utilization of support groups	general
Supportive people and behaviors	general
Parents	general
Other important relationships	general
Romantic Partners	typical
Unsupportive people and behaviors	typical
Impact of CAH on dating	typical
Having never met anyone else with CAH	typical
Domain 4: Healthcare experiences of women with CAH	General
Physicians	general
Physician's knowledge of CAH	general
Negative medical interventions	general
Positive medical interventions	typical
Referrals	typical
Mental health clinicians: therapists, psychologists and psychiatrists	general
Reasons for and goals of mental health treatment/therapy	general
Positive psychotherapeutic interventions	general
Negative psychotherapeutic interventions	variant
Clinicians' knowledge of CAH	variant
Intrapersonal processes in healthcare treatment	general
Domain 5: Recommendations for healthcare professionals	general
Helpful therapeutic traits	general
The need for more education about CAH	typical
Things to consider when treating individuals with CAH	typical
Emotional impact	typical
Medical considerations	typical
Connect individuals with support groups	variant
The importance of access to therapeutic services	variant
Domain 6: Systemic considerations	general
Generational and cohort differences in women with CAH	typical
Availability and appropriateness of care	typical
Insurance and other financial concerns related to CAH	typical
Societal biases and expectations	variant