Little is known about disclosure of diagnosis to males with Klinefelter syndrome (KS) diagnosed before birth or during childhood, especially in Asian context. Insufficient preparation for disclosure communication could lead to the child's depression, anxiety, or disrupted self-esteem. This is an interventional and qualitative interview study with a brief self-reported survey. The study consists of three phases. In phase I, adults with KS were asked about their experiences and viewpoints toward KS disclosure and diagnosis through individual interviews. In phase II, unaffected adolescent males were given information about KS and then asked to give hypothetical answers to a questionnaire followed by a group interview, as if they had KS. In phase III, parents of children with KS were asked to complete a questionnaire followed by a group interview which included a discussion about their disclosure plans and their concerns. The parents were provided information obtained from adults with KS and unaffected adolescent males, and were then interviewed again as a group. We found that the most hurtful issues were discovering their infertility from KS and late disclosure. From the perspective of unaffected adolescent males, early disclosure in early or mid-teens in a neutral, supportive, and relaxed manner, along with information on benefits of hormonal treatment, the assurance of biological sex as "male," and avoidance of some sensitive words are strongly recommended, as a way to promote self-confidence and positive coping with the diagnosis. After intervention, the parents reported more confidence and less anxiety about disclosing the diagnosis to their children, and indicated that they would disclose KS at an earlier age. For unaffected adolescent males, though it is a hypothetical scenario and their reaction may differ from affected adolescents, unaffected adolescent males' viewpoints on how they might react are more or less representative of cultural changes for the new generation, especially in the Asian context. In addition, their viewpoints influenced parents' decision and genetic counseling plans for the diagnosis disclosure of KS to their children. We propose a preliminary guideline for KS diagnosis disclosure.
Background Adolescence is considered as a transition period from childhood to adulthood. This transition leads to various types of risk behaviors. Ten percent of adolescents suffer from a chronic illness that can limit their daily activities and which may exhibit higher rates of risk behaviors than those without chronic illnesses. Objective To evaluate the prevalence of risk behaviors in chronically ill adolescents compared to adolescents without chronic illnesses and their associated risk factors. Methods We enrolled 312 patients aged 10–20 years who visited Ramathibodi Hospital from January 2015 to December 2017. There were 161 adolescents with chronic illnesses and 151 without a chronic illness. We used a computer-based program for the Youth Risk Behaviors Survey as well as a confidentiality interview. Statistical analyses included the chi-squared (χ2) and Student’s t-tests as appropriate. Results The risk behaviors in chronically ill adolescents were the following: learning problems, 86.3%; excessive screen time, 62.3%; unintentional injuries, 60.2%; depression, 38.5%; low self-esteem, 18.1%; substance abuse, 13% and sexual behavior, 6.2%. Youths with a chronic illness were more likely to report significantly higher risk of excessive screen time (62.3% vs. 48%, p = 0.01), depression (38.5% vs. 15.9%, p < 0.01) and, also low self-esteem (18.1% vs. 8.6%, p = 0.01) compared to those without chronic illness. Conclusions These results indicated that adolescents with chronic illnesses engage more in health risk behaviors and are prone to mental health and learning problems. These data emphasize the importance of health risk behavior screening and preventive counseling for young patients with chronic illnesses where these risks might worsen their disease.
Background: Adolescent pregnancy is an important health and social issue that affects both individual and social well-being. However, deriving a national estimate is challenging in a country with multiple incomplete national databases especially the abortion statistics. The objective of this study was to estimate the adolescent pregnancy rates in Thailand using capture-recapture method. Methods: An application of capture-recapture method was conducted using two cross-sectional databases (i.e., the national birth registration and the Ministry of Public Health standard health databases) and one hospital-based data source from medical record reviews. A 3-sources capture-recapture with log-linear model was applied to estimate adolescent pregnancy rates. Results: A total number of 741,084, 290,922 and 25,478 records were respectively identified from the birth registrations, standard health databases and hospital-based survey data during 2008 to 2013. The estimated adolescent pregnancy rates /1000 adolescent women (95% confidence intervals (CI)) ranged from 56.3 (49.4, 66.9) to 70.3 (60.3, 76.6). The estimated rates were about 12-31% higher than adolescent birth rates reported by the Thailand Public Health Statistics. Conclusions: With the capture-recapture method, more accurate adolescent pregnancy rates were estimated. This method should be able to apply to any setting with similar context.
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