scholarly journals Case Report: Medical Aspect, Growth, and Quality of Life in Children with 46,XX Testicular Disorder of Sex Development (DSD)

2018 ◽  
Vol 54 (3) ◽  
pp. 228
Author(s):  
Nur Rochmah ◽  
Muhammad Faizi ◽  
Irwina Rahma Andriani ◽  
Soraya Salle Pasulu

46,XX testicular disorder of sexual development (DSD) is characterized by male phenotype with 46,XX karyotype. The incidence rate is 1:25,000 in male newborn. Infants with ambiguous external genitals will be confronted with issue of gender assigment and may result in a stressful condition in the parents. Since gender assignment is inevitable, several factors should be considered in DSD management. The management approach for children born with DSD is individualized and multidisciplinary. Gender assignment aims to facilitate the patient to obtain the best quality of life. Adaptation of children with 46,XX testicular DSD as a determinant of quality of life is also influenced by psychological and family conditions. The purpose of this report was to observe medical growth and development aspects of the child with 46,XX terticular DSD as indicated by the aspects of growth and development, and health related quality of life, as well as the influential aspects. PA, 18 months, was diagnosed with 46,XX testicular DSD. The patient routinely visited to endocrinology clinic, urologic surgery, and child psychiatry clinic from the age of 6 months. The parents decided to raise patient as male. The patient had undergone surgery for hypospadias correction, hormone injections, child growth monitoring, and psychological monitoring (medical records of  Dr. Soetomo Hospital, Surabaya in 2015). Management should consider individual and multidiciplinary accompaniment of the patient and parents, the importance of group support, and follow-up to adulthood, as well as possible longterm outcomes that will occur in the future so that the patients and the parents need to be prepared.

2017 ◽  
Vol 3 (1) ◽  
pp. 17 ◽  
Author(s):  
Nurin Aisyiyah Listyasari ◽  
Ardy Santosa ◽  
Achmad Zulfa Juniarto ◽  
Sultana MH Faradz

Background : Disorder of sex development (DSD) patients require comprehensive management to improve quality of life. A standardized management protocol for patients in Indonesia is not yet available resulting in patients infrequently received a proper diagnosis. This study reported a multidisciplinary management DSD in Indonesia based on minimal diagnostic facilities and expertise in developing country.Objectives : The purpose of the study is to review the management of DSD patients in Indonesia relates to providing appropriate gender assignment and to improving patients quality of life.Methodology : We analyzed the records of DSD patient admitted to the division of Human Genetics Center for Biomedical Research (CEBIOR) Faculty of Medicine Diponegoro University, Semarang, Indonesia from May 2004 - December 2015. Data were collected and analyzed for physical examination, family pedigree karyotyping, hormonal assays and  psychosocial.  Other examination such as ultrasonography, Xray and Cytoscopy were also recorded for selected cases. Bimonthly, Sexual Adjustment Team (SAT) meeting was recorded.Results : From the total 617 DSD cases we found 426 cases (69,04 %) with 46, XY DSD, 117 cases (18,96%) with 46,XX DSD and 74 cases (12%) with sex chromosome DSD. Most of the patients in the group of 46, XY DSD are Unknown Male Undervirilization (UMU) with 256 cases (60.09%). As the majority cases of 46, XX DSD was Congenital Adrenal Hyperplasia with 81 cases (69.23%). The remaining cases were Androgen Action Disorder (AAD) with 140 cases (32.86%), 46, XY DSD Gonadal Dysgenesis with 30 cases (7.04%), Androgen Excess Disorders with 3 cases (2.56%), Defect of Mullerian Development with 19 cases (16,24%), 3 cases (2.56%) of Androgen Excess and 3 cases (2.56%) of 46, XX Gonadal Dysgenesis.Conclusion : Comprehensive management for DSD Patients help patient in diagnosis, gender assignment and support patient to improve quality of life. This multidisciplinary of DSD team is the only team in Indonesia that can be used as a model for other center in Indonesia as well as other developing countries with minimal diagnostic facilities.


Author(s):  
María- José Foncubierta-Rodriguez ◽  
Rafael Ravina-Ripoll ◽  
Eduardo Ahumada-Tello ◽  
Luis Bayardo Tobar-Pesantez

Since the end of the 20th century, economists have been attracted to the study of the economics of happiness (e.g., Singh, & Alexandrova, 2020; Crespo & Mesurado, 2015; Ferrer-i-Carbonell,2013). The use of the term happiness characterizes an essential volume of this bibliographical production as a synonym for the words satisfaction, well-being, or quality of life (Teixeira&Vasque, 2020; Carlquist et al., 2017). Under this umbrella, the culture of happiness management teaches us that a management model or direction oriented to the holistic search for happiness or job satisfaction of its employees is one of the essential axial pieces that organizations have to increase the commitment of their human capital, and therefore, their productivity and business performance (Ravina et al., 2019). Public administration employees are not exempt from this reality, a group that is characterized by job stability compared to private company employees. This article is dedicated to them. The era of Industry 4.0 is a period that is characterized, among other things, by the high precariousness of labor that is originated by the implementation of management models in advanced economies. This phenomenon is derived from the technological point of view by the automation and massive robotization of production processes and the supply chain. Together with the digitalization of companies, both factors are very present in the ecosystems of the Covid-19, and have come, perhaps, to stay in the future (Bragazzi, 2020; Ghadge et al., 2020). In line with the above, a more holistic examination of this issue seems likely to show that there is a keen interest among people to enter into Work mostly in public administrations, in search of a permanent contract for their entire working life. As is known, this is especially true in countries with high unemployment levels, such as Spain. Its unemployment rate is 20.1% in mid-2020. In the collective imagination of these individuals, there is the conviction that this type of Work constitutes ambrosia of eudaimonic happiness, job security, and quality of life, especially at present, in times of the Covid-19 pandemic (Fernández-Urbano, & Kulic, 2020). In this sense, it should be noted that in the last decades of the 21st century, there has been a growing interest in researching public employees' job satisfaction (e.g., Ryu&Bae, 2020; Steijn &Van der Voet, 2019; Luechinge et al., 2010). Most of the studies carried out on this scientific topic to date show empirically that public sector workers are happier than individuals in the private sphere. It's basically due to the intrinsic benefits (flexibility, vacation, or family reconciliation, among others) that this type of government entity offers concerning for-profit organizations (e.g., Lahat&Ofek, 2020; Sánchez-Sánchez, & Puente, 2020; Danzer,2019). In this context, this article aims to examine, as a priority in the era of Industry 4.0, whether there are observed differences in the levels of congratulations between human capital working in the private sector and that working in the public sector in Spain, by analyzing a set of variables that define positions: hours, salary, stability, promotion, and stress. Finally, we must indicate, on the one hand, that the choice of this spatial framework is motivated by the scarce literature investigating the happiness of Spanish public employees in an economy with high levels of youth unemployment (Núñez-Barriopedro et al., 2020). On the other hand, the results achieved in this study may be useful in the future for the implementation of public policies aimed at significantly promoting the welfare of working citizens through the happiness management approach (Ravina-Ripoll et al., 2019), or for taking this management concept to private companies to increase the motivation of their employees (Foncubierta-Rodríguez & Sánchez-Montero, 2019). Keywords: Happiness, human resources, Industry 4.0, public sector.


2015 ◽  
Vol 4 (08) ◽  
pp. 111-135
Author(s):  
Isabel Pérez Bescanza

El presente artículo está enfocado hacia el Estudio del Arte de Calidad de Vida desde el área de la Salud, específicamente tomando en cuenta las investigaciones realizadas con niños(as) y adolescentes en cáncer y su Calidad de Vida; para ello se realizó una revisión de los últimos diez años, después de un arqueo bibliográfico se consideraron aproximadamente 80 artículos para su revisión y discusión. De acuerdo a la revisión realizada se enfocó en tres aspectos: a) Elementos conceptuales relacionados con la Calidad de Vida(CV) y la Calidad de Vida relacionada con Salud (CVRS); b) la medición de la CVRS específicamente en niños(as) y adolescentes y c) Los diferentes instrumentos de evaluación creados para medir la CVRS en niños(as) y adolescentes. En relación con el primer aspecto, este constructo ha sido más fácil medirlo que definirlo, es un concepto extenso y ambiguo. En relación con la medición, uno de los problemas es el relacionado con las dificultades inherentes a su evaluación, debido a la naturaleza bipolar objetiva-subjetiva y su multidimensionalidad, compleja e indeterminada, y esto le da a la evaluación un problema adicional, aunado también que los instrumentos elaborados para tal fin, en ocasiones no cumplen los requisitos mínimos de construcción y generalización de resultados. La mayoría de las investigaciones concluyen que es muy importante la evaluación de la CVRS en el paciente pediátrico con cáncer, ya que la sola presencia de una enfermedad crónica desestabiliza la emocionalidad del paciente. Se concluye la importancia de la medida de CVRS en pacientes pediátricos, para uso en la práctica clínica y en la salud pública, considerar el proceso de crecimiento y desarrollo físico, cognitivo, intelectual y afectivo del niño/a ya que es continuo y representa un reto captar los aspectos positivos y los que afectan negativamente en la calidad de vida del paciente. The present article is focused towards the study of the art of quality of life from the area of the health, specifically taking in has them research made with children (as) and adolescents in cancer and its quality of life; for this is performed a review of them last ten years, after a tonnage bibliographic is considered approximately 80 articles for your review and discussion. In accordance the review focused on three aspects: to) conceptual elements related to quality of life (HP) and the quality of life related with health (HRQOL); b) the measurement of HRQOL in children and adolescents and c specifically) the different assessment instruments designed to measure HRQOL in children and adolescents. Regarding the first aspect, this construct has been easier to measure it to define it, is a lengthy and ambiguous concept. In relation to the measurement, one of the problems is related to the difficulties inherent in their assessment, due to the bipolar nature and its multidimensionality, complex and indeterminate, and this gives the assessment an additional problem, also joined that elaborate instruments for that purpose, sometimes do not meet the minimum requirements of construction and generalizability of results. The majority of the investigations conclude that assessment of HRQL in pediatric cancer patients is very important since the mere presence of a chronic disease disrupts the emotionality of the patient. Is concludes the importance of the measure of HRQOL in patients Pediatric, for use in the practice clinical and in the health public, consider the process of growth and development physical, cognitive, intellectual and affective of the child / to since is continuous and represents a challenge capture them aspects positive and which affect negatively in the quality of life of the patient.


2017 ◽  
Vol 2 (2) ◽  
pp. 166
Author(s):  
Dede Nurhayati ◽  
Ai Mardhiyah ◽  
Fanny Adistie

Congenital abnormalities in children are still quite high in Indonesia such as hirschsprung disease and anorectal malformations which require the fabrication of colostomy as bowel decompression and faecal expenditure alternatives. Stoma fabrication can have a physical or psychosocial impact on a child's life. This study aimed to determine the perception of parents on the quality of life in toddler-aged children with post colostomy. The method of this research was quantitative descriptive with 35 respondents obtained by consecutive sampling technique. The participants involved in this study were the parents of toddler-aged children who had experienced colostomy surgery. The data were collected using a Pediatric Quality of Life Inventory (Peds QL) questionnaire. The data were analyzed with descriptive statistics. The results showed that 19 people (54.28%) of toddler-aged children who had experienced colostomy surgery had poor quality of life with the lowest score on cognitive function. The conclusions of this study indicated that most of parents perceived the quality of life of toddler-aged children who had experinced colostomy surgery in the bad category. The poor quality of life can affect the child growth. One of the efforts to improve the quality of life of children is by providing psychological therapy to help children deal with negative emotions and providing psychoeducation to parents about the importance of providing stimulus in toddler-aged childern so that children can have a better quality of life.


1999 ◽  
Vol 21 (3) ◽  
pp. 9-11
Author(s):  
Estrella Posada ◽  
Antonio Berdasco

In 1969 the Ministry of Public Health (MINSAP) of Cuba initiated a program to reduce infant mortality, one measure of the quality of life, in 1969. The program developed during the 1970s and while infant mortality was reduced, it became desirable to add other measures directly related to the health of the population to the program. Sampled periodically, characteristics of growth and the development, were selected as additional indicators of the health of the population.


Author(s):  
France Bégin ◽  
Leslie Elder ◽  
Marcia Griffiths ◽  
Silvia Holschneider ◽  
Ellen Piwoz ◽  
...  

ABSTRACT Growth monitoring and promotion (GMP) programs have been implemented worldwide for decades. Consistent evidence of their effectiveness is lacking and complicated by design and operational differences. Nevertheless, tracking child growth and development is a fundamental component of routine preventive child health care, and governments in 178 countries implement some form of GMP. This article makes the point that despite implementation challenges, there is a compelling need for GMP. It enables a crucial dialogue with families and communities about how to support the healthy growth and development of their children and can be a powerful tool for stimulating action and accountability for child nutrition and development at household, community, subnational, and national levels. We propose that GMP deserves a fresh rethink, with a paradigm shift that tailors GMP programs and activities for different development, geographic, and cultural contexts and considers how to optimize implementation for scalability.


2017 ◽  
Vol 88 (5) ◽  
pp. 324-330 ◽  
Author(s):  
Nalini M Selveindran ◽  
Syed Zulkifli Syed Zakaria ◽  
Muhammad Yazid Jalaludin ◽  
Rahmah Rasat

Background/Aims: Disorders of sex development (DSD) are a heterogeneous group of rare conditions. Evidence-based treatment is challenged by a lack of clinical longitudinal outcome studies. We sought to investigate the quality of life of children with DSD other than congenital adrenal hyperplasia. Methods: The participants (aged 6–18 years) were 23 patients raised as males and 7 patients raised as females. Control data were obtained from representatives of the patients’ siblings matched for age and gender. The Pediatric Quality of Life InventoryTM Version 4.0 (PedsQL) Generic Core Scales were used as the study tool. Results: In comparison with the reference data, the patient group had significantly lower overall PedsQL (p < 0.01) and school functioning (p < 0.01) scores. Also, the total PedsQL score was significantly lower in patients with DSD who were of female social sex as compared to the controls who were females. Family income, surgical procedures, degree of virilization, and mode of puberty did not influence the PedsQL scores. Conclusion: This study revealed a poorer quality of life for patients with DSD as compared to the age-matched control group. This highlights the need for a skilled multidisciplinary team to manage this group of patients.


2015 ◽  
Vol 12 (6) ◽  
pp. 1440-1449 ◽  
Author(s):  
Franco D'Alberton ◽  
Maria Teresa Assante ◽  
Maura Foresti ◽  
Antonio Balsamo ◽  
Silvano Bertelloni ◽  
...  

2019 ◽  
Vol 2 (2) ◽  
pp. 34
Author(s):  
Jinping Liu

At present, caries has become one of the diseases that threaten peoples' health. Because caries usually does not affect patients' life safety, it is not paid enough attention to. In fact, the harm of caries to human health is significant. Caries can cause damage, defect or loss of teeth in the oral cavity. And it may seriously affect the quality of life and health of patients. Especially for children, they are in a critical period of growth and development. Caries may cause pain, lead to inflammation of alveolar bone and jawbone. The development of the dental system will be affected, and even lead to deformity. The prevalence of caries is high in children. Therefore, general prevention and treatment of caries is of great significance to the healthy growth of children


Author(s):  
Anita Setyawati ◽  
Restuning Widiasih ◽  
Ermiati E ◽  
Ida Maryati

Menarche is the first experience of menstruation would cause anxiety among teenagers, fear, discomfort, and affect the quality of life of teenage. This condition was caused by the taboo assumption to discuss menstruation with family and their environment. Therefore, this study was conducted to identify urban teenagers' readiness toward menarche. This study was conducted with the process of searching, collecting and analyzing articles. The search sources used were Cinahl, Scopus, Cochrane, Pubmed, and Cengage databases. The keywords used were menarche, readiness, and urban teenagers. The inclusion criteria used were 2013 - 2018 research articles, full text, and English articles. The exclusion criteria used was non-urban teenagers. According to the keyword was found 124 articles. After being selected based on the inclusion and exclusion criteria, 7 articles were analyzed. The result showed urban teenagers' readiness consisted of internal and external readiness. Internal readiness consists of age and knowledge. Internal readiness can affect self-acceptance, maturity of mind, and views on the stages of growth and development that are being faced. External readiness consists of social support. Social support for urban teenagers is useful to get information and attention when menarche. External readiness for urban teenagers was already good but lack of internal readiness. Therefore, counseling and health education related to menarche was needed starting from elementary school.Keywords: Menarche, readiness, urban teenager.


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