Genetic Testing on Patients with Developmental Delay: A Preliminary Study from the Perspective of Physicians.

This study aimed to discover and propose solutions to various decision-making problems, including obtaining consent, encountered by physicians when administering genetic testing to patients with disabilities. A preliminary survey and focus group interviews (FGIs) were conducted with 27 specialists who had 5-25 years of clinical experience in rehabilitation medicine, pediatrics, and obstetrics and gynecology, regarding their experience in providing genetic testing to people with developmental disabilities. This included the "role of medical staff in the patient's decision-making process", "difficulty of the consent process for genetic testing", and so forth. Some limitations were identified in the genetic testing communication process for patients with disabilities. Although providing information corresponding to the level of understanding of each person and accurately evaluating the correct consenting ability is important, the usage rate of auxiliary tools, such as booklets and videos, was only 50.0%. Additionally, there were concerns regarding the marriage prospects of people with disabilities. For people with developmental disabilities to provide consent for genetic testing, legal consent forms and explanation aids that consider individual characteristics are necessary. Moreover, education on disability awareness throughout society, including cost support, is needed.

Curriculum development on the human rights of people with disabilities for future medical education: using a modified Delphi.

BACKGROUND: In order for doctors to effectively provide medical services to patients with disabilities, an understanding of this population is necessary, along with the knowledge, attitudes, and technical abilities necessary to address health problems associated with each type of disability. One way of doing this is by educating doctors about disabilities and ensuring their frequent contact with people with disabilities while they are in medical school. Therefore, this study aimed to develop a systematic medical education curriculum to enhance doctors' understanding of people with disabilities. METHODS: The authors conducted a systematic literature review to develop and verify the basic framework of the educational content and curriculum. Two surveys were also developed using the Delphi method to evaluate the adequacy and necessity of educational topics. Items with a content validity ratio equal to or greater than the minimum value were considered valid. Survey panels comprised academic experts and health care practitioners who were working with people with disabilities. We conducted two surveys, one for a basic and the other for an advanced course, in which 13 to 16 respondents took part. RESULTS: The authors selected 13 topics for the 'Basic Introductory Course' and included general educational content on the health rights of people with disabilities focused on improving students' knowledge of disabilities. The authors also selected 12 topics for the 'Care and Communication for Patients with Disabilities Course' designed to improve students' understanding of interviewing and communicating with patients with disabilities. CONCLUSIONS: In Korea, disability has received little attention in the medical curriculum to date. The curriculum developed in this study provides preliminary data for guiding future directions in medical education and developing specific support plans for an education that promotes people with disabilities' health rights.

A National Study of Life-Sustaining Treatments in South Korea: What Factors Affect Decision-Making?

PURPOSE: This cross-sectional study investigated the status of life-sustaining treatment (LST) practices and identified characteristics and factors influencing decision-making practices. MATERIALS AND METHODS: The National Agency for Management of Life-sustaining Treatment retains records provided by doctors regarding patients subject to LST implementation. A total of 71,327 patients receiving LST were identified. We analyzed all nationally reported data between February 2018 and October 2019. Indicators such as the proportion of deaths, records for decision to terminate LST, implementation of LST records, and registration of Advance Statements on LST were analyzed. RESULTS: A total of 67,252 (94.3%) end-of life decisions were implemented in South Korea. The proportion of deaths preceded by a LST plan, non-self-determination LST decision, and any advance statements was 33.5% (23,891/71,327), 66.5% (47,436/71,327), and 1.2% (890/71,327), respectively. The logistic regression model revealed that self-determination to terminate LST was more frequent for men than for women and higher for those aged 30-69. Disability (odds ratio [OR], 0.59; 95% confidence interval [CI], 0.56 to 0.61), living in non-metropolitan areas (OR, 0.84; 95% CI, 0.81 to 0.86), and disease comorbidity was independently associated with a low level of self-determination. CONCLUSION: After the implementation of the new LST Act, about a third of patients in end-of-life process made decisions regarding their medical LST. However, family members still play a major role in LST decisions where the patient's intention cannot be verified. Decisions related to LST are predominantly made when death is imminent. Thus, it is necessary to increase awareness of end-of-life LST decision-making among medical staff and the public.

Increase in the Colorectal Cancer Screening Rate by a Round-Mailed Fecal Immunochemical Testing Kit and Associated Factors in Underserved Regions of Korea: A Community-Based Intervention Study.

Background/Aims: Postal distribution of a fecal immunochemical test (FIT) kit has been recommended as an effective method of increasing participation in colorectal cancer (CRC) screening. The present study was performed to assess the impact of the round-mailed FIT kit on screening participation in underserved regions of Korea and to identify factors related to nonparticipation. Methods: Residents were recruited from three rural regions of Korea that lack screening units for the National Cancer Screening Program. A package containing a FIT kit for stool self-sampling and a return envelope addressed to the local health center was postally distributed to each subject. Thirty days after the kits were mailed, nonresponders were reminded via telephone as the second intervention. The participation rates and odds ratios with 95% confidence intervals (CIs) for each intervention response were calculated to evaluate the effect of the interventions and factors related to screening participation in response to the interventions. Results: CRC screening participation rates increased from 24.5% (95% CI, 21.6% to 27.4%) to 42.6% (95% CI, 39.3% to 46.0%) as a result of postal screening and increased further to 51.4% (95% CI, 48.0% to 54.9%) after the telephone reminder. After controlling for the sex, age, and household type of each subject, factors associated with poor response to postal screening were identified as low educational attainment and poor previous participation in the National Cancer Screening Program. Conclusions: Round-mailed FIT kits with phone call reminders were an effective intervention, nearly doubling the screening rate in underserved regions of Korea.

Evaluation of satisfaction with three different cervical cancer screening modalities: clinician-collected Pap test vs. HPV test by self-sampling vs. HPV test by urine sampling.

OBJECTIVE: Human papillomavirus testing by self-sampling and urine sampling might be alternatives to Papanicolaou test (Pap test) for cervical cancer screening (CCS), and may increase compliance and adherence thereto. The present study aimed to explore satisfaction and preferences for cervical screening modalities among Korean women. METHODS: In total, 732 women aged between 20 and 69 years responded to a questionnaire designed to survey the women's perceived satisfaction for the 3 CCS modalities: clinician-collected Pap test, self-collected vaginal sampling (self-sampling) and urine sampling. RESULTS: Overall satisfaction was significantly higher with both the self-sampling and urine sampling than the clinician-collected Pap test (odds ratio [OR]=2.01; 95% confidence interval [CI]=1.48-3.00 and OR=2.47; 95% CI=1.75-3.48, respectively). Psychological distress, including embarrassment, pain, anxiety, discomfort, and stress, with self-sampling and urine sampling were significantly lower than that with the Pap test. 52% of participants reported preferences for self-sampling in the next screening round. CONCLUSIONS: Korean women were more likely to report satisfaction with alternative modalities (self-sampling and urine sampling) for CCS in comparison to the Pap test. This suggests that self-collected modalities may help with improving CCS uptake rates by eliminating burden related with the Pap test. However, further studies for test accuracy and cost-effective analysis of the alternative modalities should be conducted in order to apply CCS.

Developing key performance indicators for guaranteeing right to health and access to medical service for persons with disabilities in Korea: Using a modified Delphi.

Recently, the Act on Guarantee of Right to Health and Access to Medical Service for Persons with Disabilities was implemented to legally define the health care system for persons with disabilities (PWDs) and the guarantee of access to medical care in Korea. This study aimed to develop specific goals and performance indicators to establish a system to guarantee right to health and access to medical service for PWDs. The first procedure was the establishment of the performance indicators, and the second was the content validity verification of the established performance indicators. To establish the performance indicators, we used the policy indicators of the government to improve the health of the Korean people. The indicators that needed to be newly developed were established based on literature review and expert consultation. Three Delphi surveys were conducted to verify the content validity of the established performance indicators. The content validity index (CVI) was obtained for the importance and possibility of the performance indicators. The indicators using the existing policy indicators are "proportion of public health centers" and "rate of health checkup of PWDs," and newly developed indicators are "establishment of facilities for PWDs in health care facilities (buildings and personnel)" and "diagnosis of autism spectrum disorder in early childhood (average age and awareness)." The final performance indicators consist of a total of six areas, 22 sub-areas, and 40 individual indicators. The final performance indicators in this study can be used as basic data for continuously identifying the health status of PWDs in Korea and establishing the national policy for their health promotion. This study is also expected to serve as a framework to guarantee the right to health and access to medical service for PWDs rather than simply containing declarative content.

A prospective pilot evaluation of vaginal and urine self-sampling for the Roche cobas 4800 HPV test for cervical cancer screening.

This pilot study sought to evaluate the feasibility of utilizing vaginal self-swabs and urine samples for HPV-based cervical cancer screening in 700 women who had undergone conventional Pap smear screening via the national cervical cancer program in Korea. The cobas 4800 HPV test was utilized to detect HPV in the self-samples. Pap smear results revealed three cases of atypical squamous cells of undetermined significance, 649 cases of negative for an intraepithelial lesion or malignancy, and 48 non-specific inflammatory findings. High-risk HPV was detected in 6.7% of urine samples and 9.6% of vaginal self-swab samples. The overall agreement for HPV 16/18 between urine and vaginal self-swab samples was 99.1% (95%CI 98.1% to 99.6%). Colposcopic biopsy revealed one cervical intraepithelial neoplasia (CIN) 3 lesion, 12 CIN1 lesions, and 23 normal or chronic cervicitis lesions. In conclusion, urine and vaginal self-swab sampling was feasible and deemed a potential alternative for HPV detection in women who hesitate to participate in cervical cancer screening programs. Meanwhile, due to overall lower rates of abnormal cytology and sexual risk behaviors in Korea, a larger sample size than expected is needed to assess the sensitivity of CIN2+ detection via self-samples.

Comparison of the Abbott RealTime High Risk HPV test and the Roche cobas 4800 HPV test using urine samples.

BACKGROUND: Human papillomavirus (HPV) testing based on cervical samples is important for use in cervical cancer screening. However, cervical sampling is invasive. Therefore, non-invasive methods for detecting HPV, such as urine samples, are needed. OBJECTIVES: For HPV detection in urine samples, two real-time PCR (RQ-PCR) tests, Roche cobas 4800 test (Roche_HPV; Roche Molecular Diagnostics) and Abbott RealTime High Risk HPV test (Abbott_HPV; Abbott Laboratories) were compared to standard cervical samples. STUDY DESIGN: The performance of Roche_HPV and Abbott_HPV for HPV detection was evaluated at the National Cancer Center using 100 paired cervical and urine samples. The tests were also compared using urine samples stored at various temperatures and for a range of durations. RESULTS: The overall agreement between the Roche_HPV and Abbott_HPV tests using urine samples for any hrHPV type was substantial (86.0% with a kappa value of 0.7173), and that for HPV 16/18 was nearly perfect (99.0% with a kappa value of 0.9668). The relative sensitivities (based on cervical samples) for HPV 16/18 detection using Roche_HPV and Abbott_HPV with urine samples were 79.2% (95% CI; 57.9-92.9%) and 81.8% (95% CI; 59.7-94.8%), respectively. When the cut-off CT value for Abbott_HPV was extended to 40 for urine samples, the relative sensitivity of Abbott_HPV increased to 91.7% from 81.8% for HPV16/18 detection and to 87.0% from 68.5% for other hrHPV detection. The specificity was not affected by the change in the CT threshold. CONCLUSIONS: Roche_HPV and Abbott_HPV showed high concordance. However, HPV DNA detection using urine samples was inferior to HPV DNA detection using cervical samples. Interestingly, when the cut-off CT value was set to 40, Abbott_HPV using urine samples showed high sensitivity and specificity, comparable to those obtained using cervical samples. Fully automated DNA extraction and detection systems, such as Roche_HPV and Abbott_HPV, could reduce the variability in HPV detection and accelerate the standardization of HPV detection in urine. Thus, urine samples may be an effective alternative for HPV detection in women who hesitate to participate in cervical cancer screening programs.

What Do Korean Women Know and Want to Know about Thyroid Cancer? A Qualitative Study.

BACKGROUND: Despite increasing debate about overdiagnosis and overtreatment of thyroid cancer in Korea, information to guide decisions on whether or not to undergo screening for and treatment of abnormal lesions of the thyroid is lacking. Moreover, studies have yet to outline what lay people know and want to know about thyroid cancer. The primary aim of this study was to explore general awareness of thyroid cancer among Korean women, their sources of information, and their satisfaction with the information they are provided. The secondary aim was to investigate information needs about thyroid cancer. MATERIALS AND METHODS: A qualitative study using focus group interviews was conducted. Twenty-nine women were divided into four groups: (1) participants who had never undergone thyroid ultrasound screening; (2) those who had undergone screening, (3) those who continued to undergo regular check-ups with ultrasonography for benign nodules of the thyroid; and (4) participants who had undergone surgery for thyroid cancer. RESULTS: A widespread lack of awareness of information on thyroid cancer was noted among participants in groups 1 and 2 who were not well aware of thyroid cancer and generally recognized it as a'good cancer'. Surprisingly, instead of doctors and medical personnel, most participants reported obtaining information from acquaintances and media outlets. Moreover, most participants described dissatisfaction with their experience with screening and a lack of explanation on treatment and test results from medical personnel. CONCLUSIONS: Women in Korea seek reliable information on thyroid cancer that could help them to better understand the disease and make informed decisions regarding screening and treatment. More effort is needed from medical personnel to communicate the implications of thyroid cancer, screening results, and treatments thereof to lay people.

A qualitative study of women's views on overdiagnosis and screening for thyroid cancer in Korea.

BACKGROUND: The incidence of thyroid cancer in Korea has increased by about 25 % every year for the past 10 years. This increase is largely due to a rising incidence in papillary thyroid cancer, which is associated with an overdiagnosis of small tumors that may never become clinically significant. This study was conducted to explore Korean women's understanding of overdiagnosis and to investigate changes in screening intention in response to overdiagnosis information. METHODS: Focus group interviews were conducted among women of ages 30-69 years, who are commonly targeted in Korea for cancer screening. Women were divided into four groups according to thyroid cancer screening history and history of thyroid disease. Of 51 women who were contacted, 29 (57 %) participated in the interviews. RESULTS: Prior awareness of thyroid cancer overdiagnosis was minimal. When informed about the risks of overdiagnosis, the participants were often surprised. Overcoming initial malcontent, many women remained skeptic about overdiagnosis and trusted in the advice of their physicians. Meanwhile, some of the study participants found explanations of overdiagnosis difficult to understand. Further, hearing about the risks of overdiagnosis had limited impact on the participants' attitudes and intentions to undergo thyroid cancer screening, as many women expressed willingness to undergoing continued screening in the future. CONCLUSION: A large majority of Korean women eligible for and had undergone thyroid cancer screening were unaware of the potential for overdiagnosis. Nevertheless, overdiagnosis information generally had little impact on their beliefs about thyroid cancer screening and their intentions to undergo future screening. Further research is needed to determine whether these findings could be generalized to the wider Korean population.