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

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.

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

Psychosexual Quality of Life in Adult Intersexuality: The Example of Congenital Adrenal Hyperplasia (CAH)

2000 ◽  
pp. 200-208 ◽  
Author(s):  
Heino F. L. Meyer-Bahlburg ◽  
Sonia Gidwani ◽  
Ralf W. Dittmann ◽  
Curtis Dolezal ◽  
Susan W. Baker ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Congenital Adrenal Hyperplasia ◽  
Adrenal Hyperplasia

Metabolic profile, cardiovascular risk factors and health-related quality of life in children, adolescents and young adults with congenital adrenal hyperplasia

2019 ◽  
Vol 32 (8) ◽  
pp. 871-877 ◽  
Author(s):  
Roopa Vijayan ◽  
Nisha Bhavani ◽  
Praveen V. Pavithran ◽  
Vasantha Nair ◽  
Usha V. Menon ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Risk Factors ◽  
Cardiovascular Risk ◽  
Congenital Adrenal Hyperplasia ◽  
Cardiovascular Risk Factors ◽  
Metabolic Profile ◽  
Good Control ◽  
Adrenal Hyperplasia ◽  
Age And Sex

Abstract Background The present study was designed to evaluate the metabolic profile, cardiovascular risk factors and quality of life in children with congenital adrenal hyperplasia (CAH) and compare it with age- and sex-matched controls. Methods Fifty-two patients aged 3–21 years with classic CAH due to 21-hydroxylase deficiency were included in the study. Metabolic profiling was done for 36 cases and compared with 28 healthy age- and sex-matched controls. Quality of life was assessed in all 52 children and their parents using a validated Pediatric Quality of Life Inventory (PedsQL) questionnaire and was compared with normative data from the same population. Results The median age was 12 years with 14 (27%) males and 38 (73%) females. Out of the total 52 patients, 35 (67%) had salt wasting and 17 (33%) had simple virilising CAH. The median height standard deviation score (SDS) of cases was similar to that of controls (−0.72 vs. −0.64, p = 0.57) and 81% of females had normal pubertal status indicating a good control of the disease. Weight SDS, body mass index (BMI) SDS, mean diastolic blood pressure and insulin resistance were significantly higher in cases when compared to controls (0.31 vs. −0.3; 0.96 vs. 0.17; 67.8 ± 10.49 vs. 61 ± 8.49 and 2.1 vs. 0.95, respectively). The quality of life was significantly reduced in all domains as per parents’ perspective, whereas the children reported reduced quality of social and school functioning. There was no significant correlation between quality of life and metabolic parameters. Conclusions Children with CAH despite a reasonably good control of the disease have a higher cardiovascular risk and reduced quality of life when compared to healthy controls.

Assessment of health-related quality of life in Egyptian children and adolescents with congenital adrenal hyperplasia

2020 ◽  
Vol 33 (2) ◽  
pp. 295-304
Author(s):  
Noha Musa ◽  
Noha Asem ◽  
Shaza Basyony ◽  
Lubna Fawaz
Keyword(s):  
Quality Of Life ◽  
Congenital Adrenal Hyperplasia ◽  
Children And Adolescents ◽  
Hospital Admissions ◽  
Hormonal Control ◽  
Physical Domain ◽  
Adrenal Hyperplasia ◽  
Egyptian Children ◽  
Health Related

AbstractBackgroundCongenital adrenal hyperplasia (CAH) is a chronic disorder causing adrenal insufficiency and hyperandrogenism affecting the quality of life (QOL). The objective of the study was to assess the health-related QOL (HRQOL) in Egyptian children and adolescents with CAH and to identify factors affecting it.MethodsThis cross-sectional study included 200 CAH patients (with 21-hydroxylase deficiency [21-OHD]) who were assessed according to their age, sex, clinical phenotype, timing of genitoplasty, hospital admissions within the last year, compliance to treatment, regularity of follow-up, presence of complications and hormonal control. HRQOL was assessed using the World Health Organization (WHO)QOL-BREF questionnaire with four domains analyzed independently including physical, psychological, social and environmental domains, with higher scores indicating better QOL.ResultsThe study included 140 females and 60 males with a mean age of 6.6 ± 4.5 years, and 88% were salt-wasting (SW). Older patients had significantly lower QOL scores (r = − 0.151, p = 0.033). The physical domain correlated significantly with the degree of virilization (r = − 0.491, p = 0.001) and frequency of hospitalization (r = − 0.495, p < 0.001). The psychological domain was affected by age (r = − 0.157, p = 0.026) and timing of genitoplasty (r = − 0.326, p = 0.001), while the social domain was affected by age (r = −0.277, p < 0.005) and pubertal stage (r = − 0.195, p = 0.006). Females had lower scores at the psychological domain (p < 0.001), whereas males had lower scores at the physical domain (p = 0.003). Salt-losing patients had lower scores at the physical domain (p = 0.001). Patients with good hormonal control had higher scores at the physical domain (p = 0.03). Genitoplasty affected both psychological and social domains (p = 0.003 and 0.01, respectively). Patients with hypertension and hirsutism had lower QOL scores (p < 0.05).ConclusionsHRQOL was relatively more affected in CAH patients with older age, poor hormonal control, high frequency of hospital admissions and those who developed complications.

Sign in / Sign up

Export Citation Format

Share Document