scholarly journals Early Genital Surgery in Disorders/Differences of Sex Development: Patients’ Perspectives

2021 ◽  
Vol 50 (3) ◽  
pp. 913-923
Author(s):  
Elena Bennecke ◽  
◽  
Stephanie Bernstein ◽  
Peter Lee ◽  
Tim C. van de Grift ◽  
...  

AbstractControversy continues over a proposed moratorium on elective genital surgery in childhood for disorders/differences of sex development (DSD). Empirical evidence on patient preference is needed to inform decision-making. We conducted a multicentre survey by cross-sectional questionnaire in 14 specialized clinics in six European countries. The sample comprised 459 individuals (≥ 16 years) with a DSD diagnosis, including individuals with congenital adrenal hyperplasia (CAH) (n = 192), XY DSD with prenatal androgen effect (A) (n = 150), and without (nA) (n = 117). Main outcome measures were level of agreement with given statements regarding genital surgery, including clitoris reduction, vaginoplasty, and hypospadias repair. A total of 66% of individuals with CAH and 60% of those with XY DSD-A thought that infancy or childhood were the appropriate age for genital surgery. Females with XY DSD were divided on this issue and tended to prefer vaginoplasty at a later age (XY DSD-A 39%, XY DSD-nA 32%). A total of 47% of males preferred early hypospadias surgery. Only 12% (CAH), 11% (XY DSD-A), and 21% (XY DSD-nA) thought they would have been better off without any surgery in childhood or adolescence. Individuals who had early genital surgery were more likely to approve of it. Outcome data failed to support a general moratorium on early elective genital surgery. Participant perspectives varied considerably by diagnostic category, gender, history of surgery, and contact with support groups. Case-by-case decision-making is better suited to grasping the ethical complexity of the issues at stake.Trial registration: German Clinical Trials Register DRKS00006072.

2016 ◽  
Vol 13 (1) ◽  
pp. 9-12
Author(s):  
Sudhir Regmi ◽  
Deewakar Sharma

Background and Aims: Fetal echocardiography is helpful in early detection of Congenital Heart Disease. Our study was conducted to evaluate the most common indications of referral and outcome in a tertiary-care fetal echocardiography practice.Methods: A Cross-sectional analysis of all pregnant women referred by obstetricians to cardiology unit for fetal echocardiography over a 1-year period (July 2014 and July 2015) was performed. The primary indications for referral for fetal echocardiography were obtained from the obstetric referral forms. Outcome data were extracted from performa containing client’s demographic, physical examination and the fetal echocardiograhic data. Postnatal Echocardiography was advised to all cases having positive echocardiographic finding.Results: A series of 251 fetal cardiac studies were reviewed. Average gestational age was 25.6 weeks (range, 18 to 38 weeks). Thirty-eight (15.1%) pregnant women had abnormal fetal cardiac findings. The most common referral for fetal cardiac scan was related to maternal indications (48.6%). Other indications were abnormal prenatal fetal findings in ultrasonography (23.1%), family history of CHD (12%), general screening (15.5%), and follow up of IVF (In-vitro fertilization) (0.8%). The highest yield of significant abnormal findings was there among patients referred with abnormal prenatal fetal finding in ultrasonography (47%).Conclusion: Majority of referral were for abnormal prenatal ultrasonographic findings. So, fetal Echocardiography is an important part of overall management of the pregnancy at risk for producing an infant with congenital heart disease.Nepalese Heart Journal 2016; 13(1): 9-12


2017 ◽  
Vol 13 (4) ◽  
pp. 402-413 ◽  
Author(s):  
Emilie K. Johnson ◽  
Ilina Rosoklija ◽  
Angela Shurba ◽  
Anthony D'Oro ◽  
Elisa J. Gordon ◽  
...  

Author(s):  
Bennecke E ◽  
Bernstein S ◽  
Lee P ◽  
van de Grift TC ◽  
Nordenskjold A ◽  
...  

2017 ◽  
Vol 3 (1) ◽  
pp. 19-37
Author(s):  
Legawati Legawati ◽  
Nang Randu Utama

The maternal mortality rate (MMR) and infant mortality rate (IMR) is a barometer of a country's health services. In developed countries, the incidence of severe preeclampsia and eclampsia ranges from 6-7% 0.1 to 0.7%. While the maternal mortality rate due to pre-eclampsia and eclampsia in developing countries is still high (Betty & Yanti, 2011). To analyze the risk factors of weight in Pre eclampsia Referral Hospital Sultan Imanudin Pangkalan Bun and Dr. Doris Sylvanus Palangkaraya. This was an observational study conducted using a cross sectional study design. A cross-sectional study is when the influence of independent variables (exposure) and the dependent variable (effect) is observed and measured at the same time. Based on multivariable logistic regression analysis of factors affecting the risk factors PEB is the mother's age, education, gestational age, parity, ANC. Factors unrelated significantly is work, spacing, PE history, history of diabetes, Gemelli, economic and social decision-making. Factors that increase the risk of PEB is the mother's age, education, occupation, gestational age, parity, history of PE, the ANC and the social economy. Factors unrelated significantly is spasing, history of diabetes, Gemelli, and decision making. For pregnant women can do a pregnancy without looking at risk factors for PEB or no risk factors, to see some of the risk factors determinants. For health workers to carry out pregnancy tests with a focus on the pregnancy.


Author(s):  
Jennifer A Hansen-Moore ◽  
Hillary M Kapa ◽  
Jennifer L Litteral ◽  
Leena Nahata ◽  
Justin A Indyk ◽  
...  

Abstract Objective To assess health-related quality of life (HRQoL), psychosocial adjustment, and family functioning of children with differences of sex development (DSD) or cleft lip and/or palate (CL/P). Methods In this cross-sectional study, parents of children with DSD (n = 67), CL/P (n = 121), and a comparison group of unaffected youth (n = 126) completed standardized measures assessing family functioning and their children’s HRQoL and psychosocial adjustment. Medical charts were abstracted for youth with either congenital condition. Results Children with DSD were rated as having significantly lower HRQoL and greater internalizing problems compared to youth with CL/P and unaffected youth. Children in the DSD group were also significantly more likely to fall into the clinical risk categories for total and internalizing problems relative to the CL/P and unaffected groups. Caregivers of children with DSD were significantly more likely to endorse items about child suicidality compared with caregivers in the CL/P and unaffected groups. No significant differences were found between groups for externalizing problems or the expressiveness domain of family functioning; parents of children with DSD reported significantly less family conflict relative to the other groups and greater cohesion relative to the unaffected group. Conclusions Youth with DSD appear to be at greater risk for psychosocial problems relative to children with CL/P and unaffected peers. Results underscore the need for integrated interdisciplinary care and ongoing psychosocial risk monitoring in youth with DSD.


2020 ◽  
Vol 45 (9) ◽  
pp. 1053-1062
Author(s):  
Caroline M Roberts ◽  
Christina M Sharkey ◽  
Dana M Bakula ◽  
Megan N Perez ◽  
Alexandria J Delozier ◽  
...  

Abstract Objective A subset of parents of children with disorders/differences of sex development (DSD) including ambiguous genitalia experience clinically elevated levels of anxious and depressive symptoms. Research indicates that uncertainty about their child’s DSD is associated with parent psychosocial distress; however, previous studies have been cross-sectional or correlational in nature. The current study is the first to examine the longitudinal trajectory of the relationship between caregiver-perceived uncertainty about their child’s DSD and caregiver anxious and depressive symptoms across the first 12 months following genital surgery in young children, or if surgery was not performed, the first 12 months following study entry. Methods One hundred and thirteen caregivers (Mage = 32.12; 57.5% mothers; 72.6% Caucasian) of children (N = 70; Mage = 9.81 months; 65.7% female) with DSD were recruited from 12 DSD specialty clinics in the United States. Caregivers completed psychosocial measures at baseline, 6 and 12 months following genitoplasty, or study entry if parents elected not to have surgery for their child. Results Caregiver illness uncertainty and both anxious and depressive symptoms were highest at baseline and decreased over time (ps < .05). Caregiver illness uncertainty predicted symptoms of anxious and depressive symptoms across all time points (ps < .05). Conclusions Caregivers’ perceptions of uncertainty about their child’s DSD are highest soon after diagnosis, and uncertainty continues to predict both anxious and depressive symptoms across time. Thus, the initial diagnostic period is a critical time for psychological assessment and intervention, with parent illness uncertainty being an important clinical target.


2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Zhong-chen Luo ◽  
Xu Liu ◽  
Anni Wang ◽  
Jian-qiong Li ◽  
Ze-hong Zheng ◽  
...  

Abstract Background As the birth policy has been adjusted from one-child-one-couple to universal two-child-one-couple in China, there is an increasing number of women undergoing a second pregnancy after a previous cesarean section (CS). Undertaking an elective repeat CS (ERCS) has been taken for granted and has thus become a major contributor to the increasing CS rate in China. Promoting trial of labor after CS (TOLAC) can reduce the CS rate without compromising delivery outcomes. This study aimed to investigate Chinese obstetricians’ perspectives regarding TOLAC, and the factors associated with their decision-making regarding recommending TOLAC to pregnant women with a history of CS under the two-child policy. Methods A cross-sectional survey was carried out between May and July 2018. Binary logistic regression was used to determine the factors associated with the obstetricians’ intention to recommend TOLAC to pregnant women with a history of CS. The independent variables included sociodemographic factors and perceptions regarding TOLAC (selection criteria for TOLAC, basis underlying the selection criteria for TOLAC, and perceived challenges regarding promoting TOLAC). Results A total of 426 obstetricians were surveyed, with a response rate of ≥83%. The results showed that 31.0% of the obstetricians had no intention to recommend TOLAC to pregnant women with a history of CS. Their decisions were associated with the perceived lack of confidence regarding undergoing TOLAC among pregnant women with a history of CS and their families (odds ratio [OR] = 2.31; 95% CI: 1.38–1.38); obstetricians’ uncertainty about the safety of TOLAC for pregnant women with a history of CS (OR = 0.49; 95% CI: 0.27–0.96), and worries about medical lawsuits due to adverse delivery outcomes (OR = 0.14; 95% CI: 0.07–0.31). The main reported challenges regarding performing TOLAC were lack of clear guidelines for predicting or avoiding the risks associated with TOLAC (83.4%), obstetricians’ uncertainty about the safety of TOLAC for women with a history of CS (81.2%), pregnant women’s unwillingness to accept the risks associated with TOLAC (81.0%) or demand for ERCS (80.7%), and the perceived lack of confidence (77.5%) or understanding (69.7%) regarding undergoing TOLAC among pregnant women and their families. Conclusion A proportion of Chinese obstetricians did not intend to recommend TOLAC to pregnant women with a history of CS. This phenomenon was closely associated with obstetricians’ concerns about TOLAC safety and perceived attitudes of the pregnant women and their families regarding TOLAC. Effective measures are needed to help obstetricians predict and reduce the risks associated with TOLAC, clearly specify the indications for TOLAC, improve labor management, and popularize TOLAC in China. Additionally, public health education on TOLAC is necessary to improve the understanding of TOLAC among pregnant women with a history of CS and their families, and to improve their interactions with their obstetricians regarding shared decision making.


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