Dataset Information

Development of a measure of genome sequencing knowledge for young people: The kids-KOGS.

ABSTRACT: Genome sequencing (GS) is increasingly being used to diagnose rare diseases in paediatric patients; however, no measures exist to evaluate their knowledge of this technology. We aimed to develop a robust measure of knowledge of GS (the kids-KOGS') suitable for use in the paediatric setting as well as for general public education. The target age was 11 to 15 year olds. An iterative process involving six sequential stages was conducted to develop a set of draft true/false items. These were then administered to 539 target-age school pupils (mean 12.8; SD?± 1.3), from the United Kingdom. Item-response theory was used to confirm the psychometric suitability of the candidate items. None of the Items was identified as misfits. All 10 items performed well under the two-parameter logistic model. The internal consistency of the test was 0.84 (Cronbach alpha value) indicating excellent reliability. The mean kids-KOGS score in the sample overall was 4.24 (SD; 2.49), where 0 =?low knowledge and 10 =?high knowledge. Age was positively associated with score in a multivariate linear regression. The kids-KOGS is a short and reliable tool that can be used by researchers and healthcare professionals offering GS to paediatric patients. Further validation in a clinical setting is required.

SUBMITTER: Lewis C

PROVIDER: S-EPMC6851564 | biostudies-literature | 2019 Nov

REPOSITORIES: biostudies-literature

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Development of a measure of genome sequencing knowledge for young people: The kids-KOGS.

Lewis Celine C Loe Bao S BS Sidey-Gibbons Chris C Patch Christine C Chitty Lyn S LS Sanderson Saskia C SC

Clinical genetics 20190730 5

Genome sequencing (GS) is increasingly being used to diagnose rare diseases in paediatric patients; however, no measures exist to evaluate their knowledge of this technology. We aimed to develop a robust measure of knowledge of GS (the kids-KOGS') suitable for use in the paediatric setting as well as for general public education. The target age was 11 to 15 year olds. An iterative process involving six sequential stages was conducted to develop a set of draft true/false items. These were then ad ...[more]

PMID: 31323115

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Project description:Evaluating, discussing, and advising on young children's lifestyles may contribute to timely modification of unhealthy behaviour and prevention of adverse health consequences. We aimed to develop and evaluate a new lifestyle screening tool for children aged 1-3 years. The lifestyle screening tool "FLY-Kids" was developed using data from lifestyle behaviour patterns of Dutch toddlers, age-specific lifestyle recommendations, target group analyses, and a Delphi process. Through 10 items, FLY-Kids generates a dashboard with an overview of the child's lifestyle that can be used as conversation aid. FLY-Kids was completed by parents of children aged 1-3 years attending a regular youth healthcare appointment. Youth healthcare professionals (YHCP) then used the FLY-Kids dashboard to discuss lifestyle with the parents and provided tailored advice. Parents as well as YHCP evaluated the tool after use. Descriptive and correlation statistics were used to determine the usability, feasibility, and preliminary effect of FLY-Kids. Parents (N = 201) scored an average of 3.2 (out of 9, SD 1.6) unfavourable lifestyle behaviours in their children, while 3.0% complied with all recommendations. Most unfavourable behaviours were reported in unhealthy food intake and electronic screen time behaviour. Parents and YHCP regarded FLY-Kids as usable and feasible. The number of items identified by FLY-Kids as requiring attention was associated with the number of items discussed during the appointment (r = 0.47, p < 0.001). Conclusion: FLY-Kids can be used to identify unhealthy lifestyle behaviour in young children and guide the conversation about lifestyle in preventive healthcare settings. End-users rated FLY-Kids as helpful and user-friendly. What is Known: • A healthy lifestyle is important for optimal growth, development and overall health of young children (1-3 years). • Evaluating, discussing and advising on young children's lifestyles may contribute to timely modification of unhealthy behaviour and prevention of adverse health consequences. What is New: • The new lifestyle screening tool FLY-Kids generates a dashboard with an overview of young children's lifestyle that can be used as conversation aid between parents and youth healthcare professionals. • As parents and youth healthcare professionals rated FLY-Kids as helpful and user-friendly, and the number of items identified by FLY-Kids as requiring attention was associated with the number of items discussed during the appointment, FLY-Kids can be considered guiding the lifestyle discussion in preventive healthcare settings.

Project description:Purpose: The aim of this study was, in the light of the increasing number of involuntarily childless couples, to investigate the state of knowledge of young people of fertile age about the risks for fertility disorders and their own risk behaviour. In addition, we wanted to check for a relationship between these aspects and the motives for wanting children, individual personality traits and psychological status. Materials and Methods: 498 women and men between the ages of 18 and 30 years participated in an anonymous survey. The sample consisted of 153 medical students, 190 students from other faculties and 155 vocational trainees. Their knowledge was tested by way of open questions on reproduction. The sum total from relevant life-style factors was used to estimate their risk-taking behaviour. Their psychic states were examined using the Health Questionnaire for Patients "Gesundheitsfragebogen für Patienten" PHQ-D, in addition the Leipzig Questionnaire on Motives for Wanting Children "Der Leipziger Fragebogen zu Kinderwunschmotiven" and the short version of the "Big Five Inventory" BFI-K were used. Results: The participants were aware of the risks for fertility disorders but did not always correctly assess their influence on fertility. Their knowledge about reproduction was rather low (on average 6.3 from 16 points). Medical students had a significantly higher state of knowledge and exhibited less risky behaviour as compared to the other two groups. Depressiveness and risky behaviour correlated positively and emotional aspects played the major role in attitudes towards having children. Risk behaviour was best predicted by the variables depressiveness, low level of knowledge and the feeling of being restricted in personal life by children. Discussion: Lack of knowledge on the topics fertility and reproduction could be a reason for risky behaviour and thus have a negative impact on lifestyle factors relating to fertility. Young people are aware of the risk factors that may affect fertility but do not always act accordingly. Primary prevention or, respectively, health promotion is thus necessary to prevent further increases in the number of infertile couples.

Project description:BackgroundMental ill-health is one of the most significant health and social issues affecting young people globally. To address the mental health crisis, a number of cross-sectoral research and action priorities have been identified. These include improving mental health literacy, translating research findings into accessible public health outputs, and the use of digital technologies. There are, however, few examples of public health-oriented knowledge transfer activities involving collaborations between researchers, the Arts, and online platforms in the field of youth mental health.ObjectiveThe primary aim of this project was to translate qualitative research findings into a series of online public mental health animations targeting young people between the ages of 16 and 25 years. A further aim was to track online social media engagement and viewing data for the animations for a period of 12 months.MethodsQualitative data were collected from a sample of 17 youth in Ireland, aged 18-21 years, as part of the longitudinal population-based Adolescent Brain Development study. Interviews explored the life histories and the emotional and mental health of participants. The narrative analysis revealed 5 thematic findings relating to young people's emotional and mental health. Through a collaboration between research, the Arts, and the online sector, the empirical thematic findings were translated into 5 public health animations. The animations were hosted and promoted on 3 social media platforms of the Irish youth health website called SpunOut. Viewing data, collected over a 12-month period, were analyzed to determine the reach of the animations.ResultsNarrative thematic analysis identified anxiety, depression, feeling different, loneliness, and being bullied as common experiences for young people. These thematic findings formed the basis of the animations. During the 12 months following the launch of the animations, they were viewed 15,848 times. A majority of views occurred during the period of the social media ad campaign at a cost of €0.035 (approximately US $0.042) per view. Animations on feeling different and being bullied accounted for the majority of views.ConclusionsThis project demonstrates that online animations provide an accessible means of translating empirical research findings into meaningful public health outputs. They offer a cost-effective way to provide targeted online information about mental health, coping, and help-seeking to young people. Cross-sectoral collaboration is required to leverage the knowledge and expertise required to maximize the quality and potential reach of any knowledge transfer activities. A high level of engagement is possible by targeting non-help-seeking young people on their native social media platforms. Paid promotion is, therefore, an important consideration when budgeting for online knowledge translation and dissemination activities in health research.

Dataset Information

Development of a measure of genome sequencing knowledge for young people: The kids-KOGS.

Publications

Development of a measure of genome sequencing knowledge for young people: The kids-KOGS.

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