The quality of life in adult female patients with congenital adrenal hyperplasia: A comprehensive study of the impact of genital malformations and chronic disease on female patients life

1995 ◽  
Vol 154 (9) ◽  
pp. 708-716 ◽  
Author(s):  
Ursula Kuhnle ◽  
Monika Bullinger ◽  
H. P. Schwarz
Keyword(s):  
Quality Of Life ◽  
Chronic Disease ◽  
Congenital Adrenal Hyperplasia ◽  
Adult Female ◽  
Adrenal Hyperplasia ◽  
Female Patients ◽  
The Impact ◽  
Comprehensive Study

scholarly journals Impact of transition on quality of life in patients with congenital adrenal hyperplasia diagnosed during childhood

2017 ◽  
Vol 6 (7) ◽  
pp. 422-429 ◽  
Author(s):  
Anne Bachelot ◽  
Magaly Vialon ◽  
Amandine Baptiste ◽  
Isabelle Tejedor ◽  
Caroline Elie ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Adrenal Hyperplasia ◽  
Psychological Health ◽  
Adult Patients ◽  
Adrenal Hyperplasia ◽  
Adult Care ◽  
Related Quality ◽  
The Impact

Background Health-related quality of life (QoL) in adult patients with congenital adrenal hyperplasia (CAH) has been variously reported. However, there is no study evaluating the impact of transition on quality of life. Methods Adult patients with classic or non-classic CAH diagnosed during childhood CAH, born between 1970 and 1990, were recruited from the registers of Pediatric departments belonging to the French reference center for endocrine rare disease. Primary end point was the QoL (WHOQOL-BREF). Results Seventy-three patients were included in the study, among them 59/73 were transferred to adult endocrinologist by their pediatricians for transition. WHOQOL-BREF scores were similar between patients with or without transition to specialist adult services, except for environment dimension score, which was slightly higher in CAH patients without transition. However, CAH patients with a regular follow-up had a better physical health, psychological health and environment score and item global QoL than the group without regular follow-up after transition. Conclusion Regular medical follow-up in adulthood is associated with the transition between pediatric and adult care and is associated with better QoL in adults with CAH.

scholarly journals The Impact of Adherence and Therapy Regimens on Quality of Life in Patients with Congenital Adrenal Hyperplasia

2022 ◽  
Author(s):  
Kerstin Ekbom ◽  
Anna Strandqvist ◽  
Svetlana Lajic ◽  
Angelica Hirschberg ◽  
Henrik Falhammar ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Adrenal Hyperplasia ◽  
Adrenal Hyperplasia ◽  
The Impact

WOMEN WITH NONCLASSIC CONGENITAL ADRENAL HYPERPLASIA HAVE GENDER, SEXUALITY, AND QUALITY-OF-LIFE FEATURES SIMILAR TO THOSE OF NONAFFECTED WOMEN

2020 ◽  
Vol 26 (5) ◽  
pp. 535-542 ◽  
Author(s):  
Anat Segev-Becker ◽  
Roi Jacobson ◽  
Ronnie Stein ◽  
Ori Eyal ◽  
Asaf Oren ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Sexual Orientation ◽  
Gender Identity ◽  
Congenital Adrenal Hyperplasia ◽  
World Health ◽  
Study Group ◽  
Adrenal Hyperplasia ◽  
Quality Of Life Questionnaires ◽  
The Impact

Objective: Females with the severe classic forms of congenital adrenal hyperplasia reportedly have a higher frequency of atypical gender identity, nonheterosexual sexual relationships, and cross-gender role behavior. Comparable data and quality-of-life measures among those with the milder, more prevalent form, nonclassic congenital adrenal hyperplasia, are scarce. We aimed to assess health-related quality of life, gender identity, role, and sexual orientation in women with nonclassic congenital adrenal hyperplasia via a prospective, questionnaire-based, case-control study. Methods: Thirty-eight women with nonclassic congenital adrenal hyperplasia (median age 34 years; range, 18 to 44 years) and 62 age-matched female controls were recruited. Outcome measures included the Multi-Gender Identity, Sexuality, and World Health Organization (WHO) quality-of-life questionnaires. Results: Sociodemographic parameters (marital status, number of children, and educational level) were similar for both groups, as were most measures of the Multi-Gender Identity, Sexuality, and WHO quality-of-life questionnaires. However, “sometimes-feeling-as-a-man and sometimes-feeling-as-a-woman” were more frequently reported in the study group compared to the controls (7/38 [18.4%] vs. 3/62 [4.8%], respectively; P = .02). Furthermore, more nonclassic congenital adrenal hyperplasia women reported first falling in love with a woman (4/37 [10.8%] vs. 0/58 [0%]; P = .02). Conclusion: Our findings suggest possible subtle differences in gender identity and sexual orientation between adult nonclassic congenital adrenal hyperplasia females and controls. Quality of life was not impaired in individuals within the study group. The impact of exposure to mildly elevated androgen levels during childhood and adolescence on the female brain warrants more in-depth assessment in further studies. Abbreviations: CAH = congenital adrenal hyperplasia; Multi-GIQ = Multi-Gender Identity Questionnaire; NCCAH = nonclassic congenital adrenal hyperplasia; QoL = quality of life

scholarly journals Health-related quality of life of female patients with congenital adrenal hyperplasia in Malaysia

2020 ◽  
Vol 18 (1) ◽  
Author(s):  
Ani Amelia Zainuddin ◽  
Sonia Regina Grover ◽  
Nur Azurah Abdul Ghani ◽  
Loo Ling Wu ◽  
Rahmah Rasat ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Adrenal Hyperplasia ◽  
Health Related Quality ◽  
Adrenal Hyperplasia ◽  
Female Patients ◽  
Related Quality ◽  
Health Related
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