scholarly journals Return of individual research results: What do participants prefer and expect?

PLoS ONE ◽  
2021 ◽  
Vol 16 (7) ◽  
pp. e0254153
Author(s):  
Sabina Sayeed ◽  
Robert Califf ◽  
Robert Green ◽  
Celeste Wong ◽  
Kenneth Mahaffey ◽  
...  
Keyword(s):  
Online Survey ◽  
Disease Risk ◽  
Health Study ◽  
Return Of Results ◽  
Sociodemographic Characteristics ◽  
Data Types ◽  
Cross Sectional ◽  
Research Results ◽  
Individual Research Results ◽  
Genetic Results

Newer data platforms offer increased opportunity to share multidimensional health data with research participants, but the preferences of participants for which data to receive and how is evolving. Our objective is to describe the preferences and expectations of participants for the return of individual research results within Project Baseline Health Study (PBHS). The PBHS is an ongoing, multicenter, longitudinal cohort study with data from four initial enrollment sites. PBHS participants are recruited from the general population along with groups enriched for heart disease and cancer disease risk. Cross-sectional data on return of results were collected in 2017–2018 from an (1) in-person enrollment survey (n = 1,890), (2) benchmark online survey (n = 1,059), and (3) participant interviews (n = 21). The main outcomes included (1) preferences for type of information to be added next to returned results, (2) participant plans for sharing returned results with a non-study clinician, and (3) choice to opt-out of receiving genetic results. Results were compared by sociodemographic characteristics. Enrollment and benchmark survey respondents were 57.1% and 53.5% female, and 60.0% and 66.2% white, respectively. Participants preferred the following data types be added to returned results in the future: genetics (29.9%), heart imaging, (16.4%), study watch (15.8%), and microbiome (13.3%). Older adults (OR 0.60, 95% CI: 0.41–0.87) were less likely to want their genetic results returned next. Forty percent of participants reported that they would not share all returned results with their non–study clinicians. Black (OR 0.64, 95% CI 0.43–0.95) and Asian (OR 0.47, 95% CI 0.30–0.73) participants were less likely, and older participants more likely (OR 1.45–1.61), to plan to share all results with their clinician than their counterparts. At enrollment, 5.8% of participants opted out of receiving their genetics results. The study showed that substantial heterogeneity existed in participant’s preferences and expectations for return of results, and variations were related to sociodemographic characteristics.

scholarly journals Solutions for Unexpected Challenges Encountered when Integrating Research Genomics Results into the EHR

ACI Open ◽  
2020 ◽  
Vol 04 (02) ◽  
pp. e132-e135
Author(s):  
Luke V. Rasmussen ◽  
Christin Hoell ◽  
Maureen E. Smith ◽  
Rex Chisholm ◽  
Justin Starren ◽  
...  
Keyword(s):  
Genetic Research ◽  
Lessons Learned ◽  
Return Of Results ◽  
Patient Portal ◽  
Test Results ◽  
Research Results ◽  
Genetic Test Results ◽  
Future Return ◽  
New Research ◽  
Genetic Results

Abstract Background While there have been published reports detailing technical challenges of incorporating genetic test results into the electronic health record (EHR) with proposed solutions, less has been published about unanticipated sociotechnological or practical communication challenges involved in this process. Objectives This study was aimed to describe unanticipated issues that arose returning genetic research results through the EHR as part of the National Human Genome Research Institute (NHGRI)-funded electronic Medical Records and Genomics (eMERGE) 3 consortium, and provide lessons learned for future implementations Methods We sequenced 3,000 participants on a 109-gene panel and returned genetic results initially in person and/or by letter, with a later release directly into the EHR and patient portal. Results When results were returned through the EHR, multiple participants expressed confusion and contacted the health system, resulting in our institution temporarily freezing our return of research results. Discussion We determined the likely causes of this issue to be (1) the delay between enrollment and results return, (2) inability to personalize mass e-mail messages announcing new research test results in the EHR, (3) limited space for description of test results in the EHR, and (4) the requirement to list an ordering physician for research results in the EHR. For future return of results, we propose sending preparatory e-mails to participants, including screenshots of how they can expect to see their results presented in the EHR portal. Conclusion We hope our lessons learned can provide helpful guidance to other sites implementing research genetic results into the EHR and can encourage EHR developers to incorporate greater flexibility in the future.

scholarly journals Low parental awareness about energy (calorie) recommendations for children’s restaurant meals: findings from a national survey in the USA

2017 ◽  
Vol 20 (11) ◽  
pp. 1921-1927 ◽  
Author(s):  
Vanessa M Lynskey ◽  
Stephanie Anzman-Frasca ◽  
Linda Harelick ◽  
Ariella Korn ◽  
Shanti Sharma ◽  
...  
Keyword(s):  
Parent Education ◽  
Online Survey ◽  
Sociodemographic Characteristics ◽  
Sampling Weights ◽  
Cross Sectional ◽  
Parental Awareness ◽  
Labelling Information ◽  
The Usa ◽  
Logistic Regressions ◽  
Restaurant Meals

AbstractObjectiveTo assess parental awareness of per-meal energy (calorie) recommendations for children’s restaurant meals and to explore whether calorie awareness was associated with parental sociodemographic characteristics and frequency of eating restaurant food.DesignCross-sectional online survey administered in July 2014. Parents estimated calories (i.e. kilocalories; 1 kcal=4·184 kJ) recommended for a child’s lunch/dinner restaurant meal (range: 0–2000 kcal). Responses were categorized as ‘underestimate’ (<400 kcal), ‘accurate’ (400–600 kcal) and ‘overestimate’ (>600 kcal). Confidence in response was measured on a 4-point scale from ‘very unsure’ to ‘very sure’. Logistic regressions estimated the odds of an ‘accurate’ response and confident response (‘somewhat’ or ‘very sure’) by parental sociodemographic characteristics and frequency of eating from restaurants. Sampling weights based on demographics were incorporated in all analyses.SettingUSA.SubjectsParents (n 1207) of 5–12-year-old children.ResultsOn average, parents estimated 631 (se 19·4) kcal as the appropriate amount for a 5–12-year-old child’s meal. Thirty-five per cent answered in the accurate range, while 33·3 and 31·8 % underestimated and overestimated, respectively. Frequent dining at restaurants, lower income and urban geography were associated with lower odds of answering accurately. Parents’ confidence in their estimates was low across the sample (26·0 % confident) and only 10·1 % were both accurate and confident.ConclusionsParent education about calorie recommendations for children could improve understanding and use of menu labelling information in restaurants. Targeted strategies are recommended to ensure that such efforts address, rather than exacerbate, health disparities.

scholarly journals Associations between vaping and Covid-19: cross-sectional findings from the HEBECO study

2020 ◽  
Author(s):  
Dimitra Kale ◽  
Aleksandra Herbec ◽  
Olga Perski ◽  
Sarah E Jackson ◽  
Jamie Brown ◽  
...  
Keyword(s):  
Online Survey ◽  
Living Alone ◽  
Sufficient Evidence ◽  
Sociodemographic Characteristics ◽  
List Type ◽  
Cross Sectional ◽  
Factors Associated ◽  
Motivation To Quit ◽  
Reported Data ◽  
Rule Out

AbstractAimsTo explore i) associations between vaping and self-reported diagnosed/suspected Covid-19; ii) changes in vaping since Covid-19 and factors associated with these changes; iii) whether Covid-19 motivated current or recent ex-vapers to quit.MethodsCross-sectional online survey of 2791 UK adults recruited 30/04/2020–14/06/2020. Participants self-reported data on sociodemographic characteristics, diagnosed/suspected Covid-19, vaping status, changes in vaping and motivation to quit vaping since Covid-19.ResultsThere were no differences in diagnosed/suspected Covid-19 between never, current and ex-vapers. Bayes factors indicated there was sufficient evidence to rule out small negative (protective) associations between vaping status and diagnosed/suspected Covid-19. Among current vapers (n=397), 9.7% (95% CI 6.8-12.6%) reported vaping less than usual since Covid-19, 42.0% (37.2-46.9%) reported vaping more, and 48.3% (43.4-53.2%) reported no change. In adjusted analyses, vaping less was associated with being female (aOR=3.40, 95% CI 1.73-6.71), not living with children (aOR=4.93, 1.15-21.08) and concurrent smoking (aOR=8.77, 3.04-25.64), while vaping more was associated with being younger (aOR=5.26, 1.37-20.0), living alone (aOR=2.08, 1.14-3.85), and diagnosed/suspected Covid-19 (aOR=4.72, 2.60-8.62). Of current vapers, 32.2% (95% CI 27.5-36.8%) were motivated to quit vaping since Covid-19, partly motivated by Covid-19, and 17.4%, (9.7-26.3%) of recent ex-vapers quit vaping due to Covid-19.ConclusionsAmong UK adults, self-reported diagnosed/suspected Covid-19 was not associated with vaping status. Half of current vapers changed their vaping consumption since Covid-19, with the majority reporting an increase, and a minority was motivated to quit due to Covid-19.RegistrationThe analysis plan was pre-registered, and it is available at https://osf.io/6j8z3/HighlightsNo difference found in diagnosed/suspected Covid-19 between never, current and ex-vapersHalf of current vapers changed their vaping consumption since Covid-19Motivation to quit vaping was partly related to Covid-19

scholarly journals Is Mammographic Breast Density an Endophenotype for Breast Cancer?

Cancers ◽  
2021 ◽  
Vol 13 (15) ◽  
pp. 3916
Author(s):  
Ellie Darcey ◽  
Nina McCarthy ◽  
Eric K. Moses ◽  
Christobel Saunders ◽  
Gemma Cadby ◽  
...  
Keyword(s):  
Breast Cancer ◽  
Breast Cancer Risk ◽  
Cancer Risk ◽  
Breast Density ◽  
Disease Risk ◽  
Health Study ◽  
Mammographic Breast Density ◽  
Dense Area ◽  
Cross Sectional ◽  
Meta Analyses

Mammographic breast density (MBD) is a strong and highly heritable predictor of breast cancer risk and a biomarker for the disease. This study systematically assesses MBD as an endophenotype for breast cancer—a quantitative trait that is heritable and genetically correlated with disease risk. Using data from the family-based kConFab Study and the 1994/1995 cross-sectional Busselton Health Study, participants were divided into three status groups—cases, relatives of cases and controls. Participant’s mammograms were used to measure absolute dense area (DA) and percentage dense area (PDA). To address each endophenotype criterion, linear mixed models and heritability analysis were conducted. Both measures of MBD were significantly associated with breast cancer risk in two independent samples. These measures were also highly heritable. Meta-analyses of both studies showed that MBD measures were higher in cases compared to relatives (β = 0.48, 95% CI = 0.10, 0.86 and β = 0.41, 95% CI = 0.06, 0.78 for DA and PDA, respectively) and in relatives compared to controls (β = 0.16, 95% CI = −0.24, 0.56 and β = 0.16, 95% CI = −0.21, 0.53 for DA and PDA, respectively). This study formally demonstrates, for the first time, that MBD is an endophenotype for breast cancer.

scholarly journals Sociodemographic Characteristics and Dietary Choices as Determinants of Climate Change Understanding and Concern in Saudi Arabia

2021 ◽  
Vol 18 (20) ◽  
pp. 10605
Author(s):  
Ghada Talat Alhothali ◽  
Noha M. Almoraie ◽  
Israa M. Shatwan ◽  
Najlaa M. Aljefree
Keyword(s):  
Public Health ◽  
Climate Change ◽  
Saudi Arabia ◽  
Online Survey ◽  
Change Score ◽  
Cross Sectional Study ◽  
Sociodemographic Characteristics ◽  
Cross Sectional ◽  
Dietary Choices ◽  
Global Threat

Climate change poses a global threat to public health. This study investigated the understanding of, and concern over, climate change in Saudi Arabia and examined the associations with sociodemographic characteristics and dietary choices. This cross-sectional study consisted of 280 participants recruited via an online survey. Of the study participants, 45% demonstrated a sufficient understanding of climate change, and 56% were highly concerned about climate change. Male sex, medium-high monthly income, high education, and governmental employees were determinants of sufficient understanding of and great concern over climate change. Participants who exhibited a high understanding of climate change score demonstrated significantly higher consumption of vegetables (3.47 ± 0.98) and vegetable oils (3.26 ± 1.07) than participants with a low understanding score (3.31 ± 0.96 and 3.00 ± 1.01, respectively) (p ≤ 0.01). Additionally, participants with higher concern of climate change scores exhibited lower consumption of red meat (p = 0.0001), poultry (p = 0.003), margarine (p = 0.02), and soy products (p = 0.04). The study revealed a poor understanding of, but great concern over, climate change. The intake of non-climate-friendly food was typically higher than that of climate-friendly food. These findings are critical for developing strategies to enhance awareness of climate change and encourage people to consume climate-friendly food to mitigate climate change and improve public health.

scholarly journals Survey of UK horse owners’ knowledge of equine arboviruses and disease vectors

2018 ◽  
Vol 183 (5) ◽  
pp. 159-159 ◽  
Author(s):  
Gail Elaine Chapman ◽  
Matthew Baylis ◽  
Debra C Archer
Keyword(s):  
Online Survey ◽  
Disease Risk ◽  
Clinical Signs ◽  
Disease Spread ◽  
Economic Losses ◽  
Biting Midges ◽  
Cross Sectional ◽  
Equine Welfare ◽  
Arboviral Disease ◽  
Horse Owners

Increased globalisation and climate change have led to concern about the increasing risk of arthropod-borne virus (arbovirus) outbreaks globally. An outbreak of equine arboviral disease in northern Europe could impact significantly on equine welfare, and result in economic losses. Early identification of arboviral disease by horse owners may help limit disease spread. In order to determine what horse owners understand about arboviral diseases of horses and their vectors, the authors undertook an open, cross-sectional online survey of UK horse owners. The questionnaire was distributed using social media and a press release and was active between May and July 2016. There were 466 respondents, of whom 327 completed the survey in full. High proportions of respondents correctly identified photographic images of biting midges (71.2 per cent) and mosquitoes (65.4 per cent), yet few were aware that they transmit equine infectious diseases (31.4 per cent and 35.9 per cent, respectively). Of the total number of respondents, only 7.4 per cent and 16.2 per cent correctly named a disease transmitted by biting midges and mosquitoes, respectively. Only 13.1 per cent and 12.5 per cent of participants identified specific clinical signs of African horse sickness (AHS) and West Nile virus (WNV), respectively. This study demonstrates that in the event of heightened disease risk educational campaigns directed towards horse owners need to be implemented, focussing on disease awareness, clinical signs and effective disease prevention strategies.

scholarly journals Moving in With Family During the COVID-19 Pandemic Is Associated With Changes in Food Consumption Among College Students

2021 ◽  
Vol 5 (Supplement_2) ◽  
pp. 249-249
Author(s):  
Jessica Soldavini ◽  
Hazael Andrew ◽  
Maureen Berner
Keyword(s):  
College Students ◽  
Food Consumption ◽  
Online Survey ◽  
Multinomial Logistic Regression ◽  
Statistical Significance ◽  
Health Study ◽  
Cross Sectional ◽  
Sugary Drinks ◽  
Fresh Vegetables ◽  
The University

Abstract Objectives To assess the association between moving in with family during the COVID-19 pandemic and changes in food consumption among college students. Methods We conducted a cross-sectional analysis using data from 2,012 undergraduate and graduate students from the University of North Carolina at Chapel Hill who completed an online survey about how their food situation has been impacted during the COVID-19 pandemic. The survey data were collected in June and July of 2020 and the questionnaire asked about student experiences during the spring 2020 semester up to March 6 (pre-COVID-19), which was when the university went on Spring break and transitioned to remote learning thereafter, and after March 6 (during COVID-19). Changes in food consumption were assessed using questions adapted from the Nurse's Health Study COVID-19 Baseline Questionnaire. Students were asked if they moved in with family during the pandemic. We used multinomial logistic regression to assess the association between moving in with family during the COVID-19 pandemic and changes in consumption of certain types of foods. Models were adjusted for potential covariates and statistical significance was considered P &lt; .05. Results In adjusted models, moving in with family was associated with decreased consumption of frozen prepared meals (P &lt; .05), canned or frozen fruits (P &lt; .05), canned or frozen vegetables (P &lt; .05), whole grain foods (P &lt; .05) and increased consumption of sugary drinks (P &lt; .05), fresh fruits (P &lt; .01), fish and seafood (P &lt; .001), and red meat (P &lt; .001). There were no significant associations between moving home and consumption of fast foods; alcohol; sweetened foods like candies, brownies, ice creams, muffins, and cakes; snacks like popcorn and potato chips; and fresh vegetables (not including potatoes) in the adjusted models. Conclusions Where college students live may influence if and how the types of foods they consume changed during the COVID-19 pandemic. In our sample, changes in consumption of certain types of foods were associated with moving in with family. Funding Sources None

scholarly journals Practical Nutrition Knowledge Mediates the Relationship Between Sociodemographic Characteristics and Diet Quality in Adults: A Cross-Sectional Analysis

2019 ◽  
Vol 34 (1) ◽  
pp. 59-62 ◽  
Author(s):  
Kristine Deroover ◽  
Tamara Bucher ◽  
Corneel Vandelanotte ◽  
Hein de Vries ◽  
Mitch J. Duncan
Keyword(s):  
Diet Quality ◽  
Online Survey ◽  
Cross Sectional Study ◽  
Nutrition Knowledge ◽  
Sociodemographic Characteristics ◽  
Cross Sectional ◽  
Mediation Analyses ◽  
Highly Educated ◽  
Using Data ◽  
Sectional Analysis

Purpose: To investigate the direct and indirect effects of sociodemographic/health factors on diet quality through practical nutrition knowledge (PNK) about how to compose a balanced meal. Design: A cross-sectional study using data from an online survey of the 10 000 Steps cohort (data collected November-December 2016). Setting: Australia. Participants: Adults (n = 8161). Response rate was 16.7%. Measures: Self-reported lifestyle, health, and sociodemographic characteristics, including diet quality and PNK. Analysis: The PROCESS macro for SPSS was used to conduct the mediation analyses. Results: Better diet quality was associated with being female, older, more highly educated, and having a lower body mass index. Mediation analysis showed that PNK significantly mediated the associations between sex (a*b = 0.54, 95% confidence interval [CI] = 0.39-0.70) and education (vocational education: a*b = 0.22, 95% CI = 0.12-0.35, university: a*b = 0.48, 95% CI = 0.35-0.64), and diet quality. Practical nutrition knowledge suppressed the association between age and diet quality (a*b = −0.03, 95% CI = −0.04 to −0.03). Conclusion: Variations in diet quality between sociodemographic groups were partially explained by differences in PNK, suggesting that focusing public health efforts on increasing this specific knowledge type might be promising.

scholarly journals Parents’ intention to get vaccinated and to have their child vaccinated against COVID-19: cross-sectional analyses using data from the KUNO-Kids health study

2021 ◽  
Author(s):  
Susanne Brandstetter ◽  
◽  
Merle M. Böhmer ◽  
Maja Pawellek ◽  
Birgit Seelbach-Göbel ◽  
...  
Keyword(s):  
Online Survey ◽  
Parental Attitudes ◽  
Health Study ◽  
Prevention Measures ◽  
Cross Sectional ◽  
Logistic Regression Models ◽  
Modifiable Factors ◽  
Policy Measures ◽  
Using Data ◽  
Vaccination Hesitancy

AbstractA COVID-19 vaccine can be an important key for mitigating the spread of the pandemic, provided that it is accepted by a sufficient proportion of the population. This study investigated parents’ intention to get vaccinated and to have one’s child vaccinated against COVID-19. In May 2020, 612 parents participating with their child in the KUNO-Kids health study completed an online survey. Multivariable logistic regression models were calculated to analyze predictors of intention to vaccinate. Fifty-eight percent of parents intended to get vaccinated against COVID-19, and 51% intended to have their child vaccinated. Significant predictors for the intention to get vaccinated and for having the child vaccinated included stronger parental confidence in one’s knowledge about prevention measures and lower beliefs that policy measures were exaggerated.Conclusion: COVID-19 vaccination hesitancy was considerable in our sample of parents in Germany. However, our study revealed some potentially modifiable factors which should be addressed by a comprehensive and tailored communication and education strategy. What is Known?• A COVID-19 vaccine can mitigate the spread of the pandemic.• Many parents are skeptical about vaccinations in general. What is New?• COVID-19 vaccination hesitancy was considerable in our sample of parents from Germany, not only for getting vaccinated but also for having the child vaccinated.• Negative parental attitudes regarding policy measures to contain the pandemic were associated with a lower intention to vaccinate.

scholarly journals Postprandial Duration Influences the Association of Insulin-Related Dietary Indexes and Plasma C-peptide Concentrations in Adult Men and Women

2018 ◽  
Vol 149 (2) ◽  
pp. 286-294 ◽  
Author(s):  
Fred K Tabung ◽  
Katharina Nimptsch ◽  
Edward L Giovannucci
Keyword(s):  
Disease Risk ◽  
Health Study ◽  
Blood Collection ◽  
Linear Regression Models ◽  
Cross Sectional ◽  
Men And Women ◽  
C Peptide ◽  
Dietary Effects ◽  
Adult Men ◽  
Dietary Index

ABSTRACT Background The dietary insulin index (II) directly quantifies dietary effects on postprandial insulin secretion, whereas the empirical dietary index for hyperinsulinemia (EDIH), based on fasting C-peptide concentrations, is primarily reflective of insulin resistance. How these scores are related to nonfasting C-peptide in cohort studies has not been examined. Objective We investigated the extent to which EDIH and II scores predict plasma C-peptide concentrations, in cross-sectional analyses by postprandial duration at blood collection from 1 to ≥15 h. Methods Both EDIH and II scores were calculated from food-frequency questionnaire data reported by 3964 men in the Health Professionals Follow-up Study (1993–1995) and 6215 women in the Nurses’ Health Study (1989–1990) who were not diabetic. We constructed 12 multivariable-adjusted linear regression models separately in men and women, by postprandial duration, to calculate relative differences and absolute values of plasma C-peptide concentrations in dietary index quintiles. Results In both men and women, C-peptide concentrations were elevated 1–2 h after eating and declined with increasing postprandial duration. In men, percent differences in C-peptide concentration in the highest compared with lowest dietary index quintile were: EDIH: 0–1 h: 50%; 2 h: 22%; 14 h: 14%; ≥15 h: 30% (all P-trend< 0.05). II: 0–1 h: 19% (P-trend = 0.09); 2 h: 3% (P-trend = 0.09); 14 h: −6% (P-trend = 0.17); ≥15 h: −15% (P-trend = 0.02). Corresponding results among women were: EDIH: 0–1 h: 29% (P-trend = 0.002); 2 h: 33% (P-trend = 0.009); 14 h: 44% (P-trend < 0.0001); ≥15 h: 40% (P-trend < 0.0001). II: 0–1 h: −12% (P-trend = 0.09); 2 h: 17% (P-trend = 0.09); 14 h: −14% (P-trend = 0.009); ≥15 h: −3% (P-trend = 0.37). Conclusion The EDIH was superior to the II in predicting both fasting and nonfasting C-peptide concentrations, suggesting that the EDIH may be better in assessing dietary effects of hyperinsulinemia on disease risk in adult men and women.

Sign in / Sign up

Export Citation Format

Share Document