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Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study.

ABSTRACT: BACKGROUND:Studies in the USA report differences in opinion among parents of different ethnic groups toward genetic testing for their child; however, there are no studies that address this issue in the diverse ethnic and immigrant population in Canada. OBJECTIVE:This study aims to determine whether ethnicity and immigration status influences parental interest in clinical genetic testing for a potentially progressive kidney disease. DESIGN:This is a cross-sectional study. SETTING:Participants were recruited from the Greater Toronto Area, Canada. PARTICIPANTS:The study included 320 parents of children ages 1-18 years with nephrotic syndrome enrolled in the Insight into Nephrotic Syndrome: Investigating Genes, Health and Therapeutics (INSIGHT) observational cohort study. MEASUREMENTS:Demographic, ethnicity, immigration, and child specific factors as well as interest in genetic testing were collected through self-reported questionnaires administered at baseline study visit. METHODS:Logistic regression models were used to examine association of ethnicity and immigration status with interest in genetic testing. RESULTS:The majority of parents (85 %) were interested in genetic testing for their child. South Asian and East/Southeast Asian parents had 74 and 76 % lower odds of agreeing to genetic testing when compared to Europeans (odds ratio (OR) 0.26, 95 % confidence interval (CI) 0.10-0.68; OR 0.24, 95 % CI 0.07-0.79, respectively) after controlling for age and sex of child, age and education level of parent, initial steroid resistance, and duration of time in Canada. Immigrants to Canada also had significantly lower odds (OR 0.29, 95 % CI 0.12-0.72) of agreeing to genetic testing after similar adjustment. Higher education level was not associated with greater interest in genetic testing (OR 1.24, 95 % CI 0.64-2.42). LIMITATIONS:Participants have already agreed to aggregate genetic testing for research purposes as part of enrolment in INSIGHT study. CONCLUSION:While majority of parents were interested in genetic testing for their child, immigrants, particularly South Asians and East/Southeast Asians, were more likely to decline genetic testing. Genetic counseling needs to be tailored to address specific concerns in these parental groups to maximize informed decision-making in the clinical setting. TRIAL REGISTRATION:ClinicalTrials.gov, NCT01605266.

SUBMITTER: Borges K

PROVIDER: S-EPMC4797354 | biostudies-literature | 2016

REPOSITORIES: biostudies-literature

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Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study.

Borges Karlota K Vasilevska-Ristovska Jovanka J Hussain-Shamsy Neesha N Patel Viral V Banh Tonny T Hebert Diane D Pearl Rachel J RJ Radhakrishnan Seetha S Piscione Tino D TD Licht Christoph P B CP Langlois Valerie V Levin Leo L Strug Lisa L Parekh Rulan S RS

Canadian journal of kidney health and disease 20160317

<h4>Background</h4>Studies in the USA report differences in opinion among parents of different ethnic groups toward genetic testing for their child; however, there are no studies that address this issue in the diverse ethnic and immigrant population in Canada.<h4>Objective</h4>This study aims to determine whether ethnicity and immigration status influences parental interest in clinical genetic testing for a potentially progressive kidney disease.<h4>Design</h4>This is a cross-sectional study.<h4 ...[more]

PMID: 26998310

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Project description:ObjectiveSociodemographic changes in Norway and other western industrialised countries, including family structure and an increasing proportion of cohabiting and divorced parents, might affect the prevalence of childhood overweight and obesity issues. We aimed to examine whether parental marital status was associated with general and abdominal obesity among children. We also sought to explore whether the associations differed by gender.DesignCross-sectional.Setting127 primary schools across Norway.Participant3166 third graders (mean age 8.3?years) participating in the nationally representative Norwegian Child Growth Study in 2010.MeasurementsHeight, weight and waist circumference were objectively measured. The main outcome measures were general overweight (including obesity; body mass index ?25?kg/m(2)) using International Obesity Task Force (IOTF) cut-offs and abdominal obesity (waist-to-height ratio ?0.5) by gender and parental marital status. Prevalence ratios, adjusted for possible confounders, were calculated by log-binomial regression.ResultsGeneral overweight (including obesity) was 1.54 (95% CI 1.21 to 1.95) times more prevalent among children of divorced parents compared with children of married parents, and the corresponding prevalence ratio for abdominal obesity was 1.89 (95% CI 1.35 to 2.65). Formal tests of the interaction term parental marital status by gender were not statistically significant. However, in gender-specific analyses the association between parental marital status and adiposity measures was only statistically significant in boys (p=0.04 for general overweight (including obesity) and p=0.01 for abdominal obesity). The estimates were robust against adjustment for maternal education, family country background and current area of residence.ConclusionsGeneral and abdominal obesities were more prevalent among children of divorced parents. This study provides valuable information by focusing on societal changes in order to identify vulnerable groups.

Project description:OBJECTIVES:To assess attitudes and willingness of parents of children with congenital heart disease (CHD) regarding donating biospecimens for future CHD research, and to identify factors associated with biospecimen donation. DESIGN:Face-to-face cross-sectional survey data were analysed using logistic regression. SETTING:Cardiothoracic Surgery Inpatient Department, Shanghai Children's Medical Centre. PARTICIPANTS:Parents of children attending the cardiothoracic surgery inpatient department at Shanghai Children's Medical Center, 1 March-31 December 2016. PRIMARY AND SECONDARY OUTCOME MEASURES:Willingness and motivation regarding donating children's biospecimens, and ethical and legal considerations concerning children's future willingness to donate. RESULTS:Of 550 parents, 508 completed the questionnaire (response rate=92.4%). Overall, 69.1% (n=351) were willing to donate their children's biospecimens for medical research. Multivariate analysis indicated higher education level (college/graduate degree: OR 2.435, 95% CI 1.221 to 4.857, p=0.012; high school: OR 1.827, 95%?CI 1.190 to 2.804, p=0.006) and children's hospitalisation history (OR 1.581; 95%?CI 1.069 to 2.338, p=0.022) were positively associated with willingness to donate. The most common motivation for donation was potential benefit to other children with CHD (81.2%, n=285). The main barriers to donation were physical discomfort to their children (52.3%, n=54) and concerns about personal privacy (47.1%, n=48). Most parents (86.0%, n=302) wanted to be informed of research results using their children's donated biospecimens, and 34.8% (n=177) believed that children aged 10-18 years had the right to consent independently to research participation. CONCLUSIONS:Nearly 70% of the parents in this study were willing to donate their children's biospecimens for future CHD research. Parents' education level and children's hospitalisation history influenced willingness to donate. Most parents wanted to receive the research results related to their children's biospecimens.

Project description:Previous work demonstrates that individuals who obtain exemptions from school immunization requirements are geographically clustered, making regional differences in vaccination coverage a significant concern. Even where exemption levels are high, there are still parents that vaccinate. School-level assessments have determined that exemptors are more likely to attend wealthier schools with fewer minorities. Few studies have assessed divergent opinions within the context of a higher-exemption community to examine subtle differences in opinion surrounding vaccinations. Therefore, the objective of this work was to assess attitudes and perceptions towards vaccinations and compare them for exemptors and non-exemptors. We administered surveys to parents in high-exemption (>10%) elementary schools in Arizona during the 2012-13 school year. A total of 404 surveys were completed by parents among schools in Maricopa (n = 7) and Yavapai (n = 2) counties. Of these, 35% (n = 141) were exemptors and 65% (n = 261) were non-exemptors. Exemptors were more likely than non-exemptors to be concerned about serious side-effects (p<0.001). They were more likely to report knowing someone who had been diagnosed with a vaccine-preventable disease (p<0.001) but less likely to report that this had been a serious illness in that person (p<0.001) and they believed it is better for a child to develop immunity through illness than vaccination (p<0.001). They were less likely to trust physicians (p<0.001) and information about vaccines (p<0.001) and were more likely to obtain their health care from a naturopath (p<0.001). In summary, exemptors in these Arizona schools do not appear to be exempting their children from vaccinations due to convenience, as has been hypothesized in other settings. Based on the divergent views within high-exemption schools and reported distrust of the medical establishment, target interventions for high-exemption schools are discussed. Additionally, given the lack of effective non-policy based interventions to-date, the negligible declines in personal belief exemption rates, and vaccine preventable disease rate increases in Arizona, especially in high-exemption areas, legislative action in Arizona may also warrant further investigation.

Dataset Information

Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study.

Publications

Parental attitudes to genetic testing differ by ethnicity and immigration in childhood nephrotic syndrome: a cross-sectional study.

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