Introduction: Patient self-evaluation is an important aspect in the assessment of dysphagia and comprises both Functional Health Status (FHS) and Health-Related Quality of Life (HR-QoL). As many... Show moreIntroduction: Patient self-evaluation is an important aspect in the assessment of dysphagia and comprises both Functional Health Status (FHS) and Health-Related Quality of Life (HR-QoL). As many measures combine both FHS and HR-QoL, disease-related functioning cannot be distinguished from disease-related quality of life as experienced by the patient. Moreover, current patient self-reported measures are limited by poor and incomplete data on psychometric properties. Objective. This study aimed to establish content validity for the development of two new self-reported measures on FHS and HR-QoL in adults with oropharyngeal dysphagia (OD), in line with the psychometric taxonomy and guidelines from the COSMIN group (COnsensus-based Standards for the selection of health Measurement INstruments). Methods. Using the Delphi technique, international expert consensus was achieved; participants and patients with dysphagia evaluated relevance, comprehensiveness, and comprehensibility of definitions of relevant constructs (i.e., dysphagia, FHS and HR-QoL) and potential items. Results: A total of 66 Delphi participants from 45 countries achieved consensus across two rounds. The Delphi study resulted in two prototype measures, the Functional health status measure of Oropharyngeal Dysphagia (FOD) and the health-related Quality of life measure of Oropharyngeal Dysphagia (QOD), consisting of 37 and 25 items, respectively. Minimal revisions were required based on feedback by patients. Conclusions: This study provides evidence of good content validity for both newly developed prototype measures FOD and QOD. Future studies will continue the process of refining the measures, and evaluate the remaining psychometric properties using both Classic Test Theory (CTT) and Item Response Theory (IRT) models. Show less
Background: The COVID Radar app was developed as a population-based surveillance instrument to identify at-risk populations and regions in response to the COVID-19 pandemic. The app boasts of >8... Show moreBackground: The COVID Radar app was developed as a population-based surveillance instrument to identify at-risk populations and regions in response to the COVID-19 pandemic. The app boasts of >8.5 million completed questionnaires, with >280,000 unique users. Although the COVID Radar app is a valid tool for population-level surveillance, high user engagement is critical to the success of the COVID Radar app in maintaining validity. Objective: This study aimed to identify optimization targets of the COVID Radar app to improve its acceptability, adherence, and inclusiveness. Methods: The main component of the COVID Radar app is a self-report questionnaire that assesses COVID-19 symptoms and social distancing behaviors. A total of 3 qualitative substudies were conducted. First, 3 semistructured focus group interviews with end users (N=14) of the app were conducted to gather information on user experiences. The output was transcribed and thematically coded using the framework method. Second, a similar qualitative thematic analysis was conducted on 1080 end-user emails. Third, usability testing was conducted in one-on-one sessions with 4 individuals with low literacy levels. Results: All 3 substudies identified optimization targets in terms of design and content. The results of substudy 1 showed that the participants generally evaluated the app positively. They reported the app to be user-friendly and were satisfied with its design and functionalities. Participants' main motivation to use the app was to contribute to science. Participants suggested adding motivational tools to stimulate user engagement. A larger national publicity campaign for the app was considered potentially helpful for increasing the user population. In-app updates informing users about the project and its outputs motivated users to continue using the app. Feedback on the self-report questionnaire, stemming from substudies 1 and 2, mostly concerned the content and phrasing of the questions. Furthermore, the section of the app allowing users to compare their symptoms and behaviors to those of their peers was found to be suboptimal because of difficulties in interpreting the figures presented in the app. Finally, the output of substudy 3 resulted in recommendations primarily related to simplification of the text to render it more accessible and comprehensible for individuals with low literacy levels Conclusions: The convenience of app use, enabling personal adjustments of the app experience, and considering motivational factors for continued app use (ie, altruism and collectivism) were found to be crucial to procuring and maintaining a population of active users of the COVID Radar app. Further, there seems to be a need to increase the accessibility of public health tools for individuals with low literacy levels. These results can be used to improve the this and future public health apps and improve the representativeness of their user populations and user engagement, ultimately increasing the validity of the tools. Show less
Background: The COVID Radar app was developed as a population-based surveillance instrument to identify at-risk populations and regions in response to the COVID-19 pandemic. The app boasts of >8... Show moreBackground: The COVID Radar app was developed as a population-based surveillance instrument to identify at-risk populations and regions in response to the COVID-19 pandemic. The app boasts of >8.5 million completed questionnaires, with >280,000 unique users. Although the COVID Radar app is a valid tool for population-level surveillance, high user engagement is critical to the success of the COVID Radar app in maintaining validity.Objective: This study aimed to identify optimization targets of the COVID Radar app to improve its acceptability, adherence, and inclusiveness.Methods: The main component of the COVID Radar app is a self-report questionnaire that assesses COVID-19 symptoms and social distancing behaviors. A total of 3 qualitative substudies were conducted. First, 3 semistructured focus group interviews with end users (N=14) of the app were conducted to gather information on user experiences. The output was transcribed and thematically coded using the framework method. Second, a similar qualitative thematic analysis was conducted on 1080 end-user emails. Third, usability testing was conducted in one-on-one sessions with 4 individuals with low literacy levels.Results: All 3 substudies identified optimization targets in terms of design and content. The results of substudy 1 showed that the participants generally evaluated the app positively. They reported the app to be user-friendly and were satisfied with its design and functionalities. Participants’ main motivation to use the app was to contribute to science. Participants suggested adding motivational tools to stimulate user engagement. A larger national publicity campaign for the app was considered potentially helpful for increasing the user population. In-app updates informing users about the project and its outputs motivated users to continue using the app. Feedback on the self-report questionnaire, stemming from substudies 1 and 2, mostly concerned the content and phrasing of the questions. Furthermore, the section of the app allowing users to compare their symptoms and behaviors to those of their peers was found to be suboptimal because of difficulties in interpreting the figures presented in the app. Finally, the output of substudy 3 resulted in recommendations primarily related to simplification of the text to render it more accessible and comprehensible for individuals with low literacy levels.Conclusions: The convenience of app use, enabling personal adjustments of the app experience, and considering motivational factors for continued app use (ie, altruism and collectivism) were found to be crucial to procuring and maintaining a population of active users of the COVID Radar app. Further, there seems to be a need to increase the accessibility of public health tools for individuals with low literacy levels. These results can be used to improve the this and future public health apps and improve the representativeness of their user populations and user engagement, ultimately increasing the validity of the tools. Show less
Background: Alcohol intake influences plasma lipid levels, and such effects may be moderated by genetic variants. We aimed to characterize the role of aggregated rare and low-frequency protein... Show moreBackground: Alcohol intake influences plasma lipid levels, and such effects may be moderated by genetic variants. We aimed to characterize the role of aggregated rare and low-frequency protein-coding variants in gene by alcohol consumption interactions associated with fasting plasma lipid levels. Methods: In the Cohorts for Heart and Aging Research in Genomic Epidemiology consortium, fasting plasma triglycerides and high- and low-density lipoprotein cholesterol were measured in 34 153 individuals with European ancestry from 5 discovery studies and 32 277 individuals from 6 replication studies. Rare and low-frequency functional protein-coding variants (minor allele frequency, <= 5%) measured by an exome array were aggregated by genes and evaluated by a gene-environment interaction test and a joint test of genetic main and gene-environment interaction effects. Two dichotomous self-reported alcohol consumption variables, current drinker, defined as any recurrent drinking behavior, and regular drinker, defined as the subset of current drinkers who consume at least 2 drinks per week, were considered. Results: We discovered and replicated 21 gene-lipid associations at 13 known lipid loci through the joint test. Eight loci (PCSK9,LPA,LPL,LIPG,ANGPTL4,APOB,APOC3, andCD300LG) remained significant after conditioning on the common index single-nucleotide polymorphism identified by previous genome-wide association studies, suggesting an independent role for rare and low-frequency variants at these loci. One significant gene-alcohol interaction on triglycerides in a novel locus was significantly discovered (P=6.65x10(-6)for the interaction test) and replicated at nominal significance level (P=0.013) inSMC5. Conclusions: In conclusion, this study applied new gene-based statistical approaches and suggested that rare and low-frequency genetic variants interacted with alcohol consumption on lipid levels. Show less
Child-driven genetic factors can contribute to negative parenting and may increase the risk of being maltreated. Experiencing childhood maltreatment may be partly heritable, but results of twin... Show moreChild-driven genetic factors can contribute to negative parenting and may increase the risk of being maltreated. Experiencing childhood maltreatment may be partly heritable, but results of twin studies are mixed. In the current study, we used a cross-sectional extended family design to estimate genetic and environmental effects on experiencing child maltreatment. The sample consisted of 395 individuals (225 women; M-age = 38.85 years, range(age) = 7-88 years) from 63 families with two or three participating generations. Participants were oversampled for experienced maltreatment. Self-reported experienced child maltreatment was measured using a questionnaire assessing physical and emotional abuse, and physical and emotional neglect. All maltreatment phenotypes were partly heritable with percentages for h(2) ranging from 30% (SE = 13%) for neglect to 62% (SE = 19%) for severe physical abuse. Common environmental effects (c(2)) explained a statistically significant proportion of variance for all phenotypes except for the experience of severe physical abuse (c(2) = 9%, SE = 13%, p = .26). The genetic correlation between abuse and neglect was rho(g) = .73 (p = .02). Common environmental variance increased as socioeconomic status (SES) decreased (p = .05), but additive genetic and unique environmental variances were constant across different levels of SES. Show less
