Body Image and Quality of Life in Women with Congenital Adrenal Hyperplasia

Abstract

Objective: Women with congenital adrenal hyperplasia due to 21-hydroxylase deficiency (CAH) may have poor quality of life (QoL) and low satisfaction with body appearance. We investigated the influence of the patients’ satisfaction with their support on their QoL and body image. Design: Retrospective, comparative, Europe-wide study as part of the multicenter dsd-LIFE study. Methods: 203 women with CAH were included in this study. We investigated the patients’ QoL and body image compared to a healthy control group. The patients’ satisfaction with their treatment and support in childhood and adolescence as well as in adulthood was assessed by questionnaire and its influence on the patients’ body image and QoL was analyzed by multiple regression models. Results: Women with CAH showed worse body image and poorer physical, psychological and social QoL compared to a healthy reference population. The patients’ satisfaction with professional care in the last 12 months was a significant positive predictor for all four domains of QoL (psychological, physical, social, environmental). Dissatisfaction with care in childhood and adolescence and with general support through different stages of life was a significant negative predictor for QoL and body image. Conclusions: These results show that women with CAH have poor QoL and body image compared to a healthy reference population. Psychosocial factors such as general and family support, and social interactions with professionals have a substantial impact on QoL and body image in adult females with CAH. This should be taken into account regarding patient care and multimodal therapy.

A prospective study on disorders of sex development in Duhok city, Kurdistan region, Iraq: Genetic, etiology and clinical presentation

“…The most frequent cause of CAH is a 21-hydroxylase deficiency, which causes a child to become virilized with 46, XX. Rapid diagnosis of the underlying cause of DSD is crucial because salt-wasting nephropathy affects 75% of people with 21-hydroxylase deficiency (35). All of the preliminary studies using the first-line tests, such as measu-ring 17-hydroxyprogesterone, blood electrolytes, determining AMF and gonadotrophin levels, cytogenetic analysis (karyotype), and an abdominal ultrasound to look for müllerian structures, culminating in the final diagnosis, that indicates that the majority of the participants were detected with CAH (55%), accompanied by 37.5% with Testicular Feminization Syndrome, and the remaining with rare types that were left un-concluded.…”

An update on the long-term outcomes of prenatal dexamethasone treatment in congenital adrenal hyperplasia

“…The extent of virilisation depends on the CAH genotype and is classified according to Prader stages. Virilised genitalia may cause psychological and physiological problems for the patients ( 11 , 12 ).…”