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Motives for Participating in a Web-Based Nutrition Cohort According to Sociodemographic, Lifestyle, and Health Characteristics: The NutriNet-Santé Cohort Study
Université Paris 13, Sorbonne Paris Cité, Equipe de Recherche en Epidémiologie Nutritionnelle (EREN), Centre d’Epidémiologie et Biostatistiques Paris Nord, Inserm (U1153), Inra (U1125), Cnam, Université Paris 5, Université Paris 7, Bobigny, France
Caroline Méjean, PhD
Université Paris 13, Sorbonne Paris Cité, Equipe de Recherche en Epidémiologie Nutritionnelle (EREN), Centre d’Epidémiologie et Biostatistiques Paris Nord, Inserm (U1153), Inra (U1125), Cnam, Université Paris 5, Université Paris 7
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1,2]. Such observational studies face very high logistic costs and require substantial resources. The rapid and widespread increase in access to Internet has made this tool a viable and logical base for cohort studies because it presents advantages across all research stages [3,4]. In most industrialized countries, Internet access is greater than 50% and is still increasing . In Europe, Internet users are becoming more representative of the general population, including older adults (42% of individuals older than 55 years are regular users) and people of low socioeconomic status (73% of individuals belonging to low socioprofessional categories are regular users) . In France, in November 2009, 34.7 million French citizens (approximately 65 % of the population older than 11 years) were connected to the Internet during the previous month .
Yet Web-based prospective cohort studies are still in their infancy . Whereas issues related to participation are crucial in epidemiological studies , participation in both Web-based cohorts and repeated-measures cross-sectional studies, and associated sociodemographic profiles have been rarely investigated [8,10-22]. A few studies have compared the sociodemographic and lifestyle characteristics of participants who used Web-based questionnaires with paper-and-pencil respondents [8,14]. The Black Women’s Health Study showed that Web-based questionnaire users were younger and had higher socioeconomic status than paper-and-pencil users, but no difference was observed in terms of lifestyle or health status . These authors underlined the fact that low socioeconomic status and older age, which are markers of Web access, remain barriers to the use of Web-based questionnaires. In turn, the Millennium cohort study with military personnel has highlighted that Web responders were more likely to be male, younger, highly educated, obese, and smokers than were paper-and-pencil responders . The results regarding sex, age, and educational level seem to be due to greater technological competence in these groups and greater access to the Internet, whereas findings on weight status and smoking may reflect subtle occupational differences, such as being employed in a sedentary work environment or an unhealthier lifestyle outside of work. Also, the ATTEMPT cohort has shown that participants had similar sociodemographic and lifestyle profiles to those found in the general population , whereas NINFEA cohort participation, regarding Italian pregnant women, was associated with being older, having a higher educational level, and being native Italian compared to the general population, probably due to population-specific occurrence . In Web-based intervention studies with repeated measurements, women, older participants, nonsmokers, heavy alcohol consumers, and overweight participants were more likely to remain enrolled in Internet-delivered behavior change programs [17-22].
Voluntariness refers to the voluntary motivational nature of a person’s participation from the initial decision to participate through the course of the study, and is influenced by external and internal factors . In traditional epidemiological studies, participants are motivated by the benefits they perceive, particularly the information and care received during the medical examinations, the positive feelings about oneself or an enhanced self-image generated by the act of participation, and the sense of loyalty and belonging associated with being part of the study [24-28]. To our knowledge, no study has explored motives for participation in a Web-based cohort and the associated participant characteristics, particularly during key periods of collection of exposure data. Such information would be useful in enhancing the recruitment of diverse population samples and in improving cohort retention.
The NutriNet-Santé study was launched in May 2009 in France to investigate multiple facets of the relationship between nutrition and health along with determinants of dietary behavior . This is a large, Web-based, prospective, nutritional epidemiology cohort. To date, 156,734 volunteers aged 18 years have been included in the cohort. Participants are followed via a website specifically created for that purpose. The objective of the present study was to assess motives for participation in the NutriNet-Santé cohort after 2 years of participation, such as reasons for participation, the influence of the Internet support in participation, and the importance of public funding. We also explored sociodemographic, lifestyle, and heath characteristics associated with those motives.
Participants were part of the NutriNet-Santé Study, a large Web-based prospective observational cohort. It is implemented in a general population targeting Internet-using adult volunteers aged 18 years and older. The design, methods, and rationale have been described elsewhere . Eligible participants were recruited by different means. Initially, a vast multimedia campaign (television, radio, national and regional newspapers, posters, and Internet) called for volunteers and provided details about the study’s website . The multimedia campaigns are repeated every 6 months. Recruitment information was maintained on a large number of websites (national institutions, city councils, private firms, Web organizations) and is regularly updated via professional channels (eg, doctors, pharmacists, dentists, business partners, municipalities). The key message delivered in the call for volunteers was:
Numerous scientific studies have highlighted the role of nutrition as a protective factor or a risk of many common diseases in France, as in all industrialized countries, such as cancer, cardiovascular diseases, obesity, type 2 diabetes, dyslipidemia, and hypertension. Nutrition is not the only determinant of these health problems. Indeed, genetic, biological, and environmental factors are involved in the onset of these diseases. To highlight the specific role of nutritional factors in health, the development of cohort studies with very large populations (group of participants followed for several years) is essential as they permit to accurately measure food intake, but also take into account other determinants, such as physical activity, weight, smoking, and family history of disease. The purpose of our study is to identify nutritional risk factors or protective factors for these diseases, which is an essential step in establishing dietary recommendations to prevent the risk of disease and improve the health of the current and future generations. This is the ambitious goal of the NutriNet-Santé study and that is why researchers need you.
During each multimedia recruitment campaign and during the enrollment process, participants are informed that follow-up over at least 10 years is planned.
Previous findings showed that most of the participants enrolled after hearing about the study on television because this medium entails the widest reach . In particular, television announcements permitted the recruitment of members of population subgroups that are not typically well represented in population-based epidemiological research, those belonging to lower socioeconomic strata. The radio, newspapers, Internet, and advice from acquaintances also proved to be substantial means of disseminating information about this epidemiological study to encourage participation.
To be included, participants have to fill in on the website an initial set of questionnaires assessing dietary intake, physical activity, anthropometrics, lifestyle, and socioeconomic conditions along with health status. Participants were informed by email that, after inclusion, they would be asked to complete the same questionnaires each year as part of their follow-up. In addition, they are invited to fill in a complementary questionnaire each month. Aspects related to convenience of participation (ie, ≤20 min each month) and confidentiality were also emphasized. In addition, a system of boosting motivation and retention was implemented. In order to forge a sense of community that helps advance research, participants receive a NutriNet-Santé membership card at inclusion and a certificate on completion of each follow-up year/wave. They also receive monthly email with scientific information regarding health and nutrition, and invitations to press conferences about the study results. For purposes of retention, free screening tests for cholesterol, triglycerides, and diabetes are offered to participants (the results are sent back with a special notice in case of abnormal test results).
All baseline questionnaires were first pilot-tested and compared with traditional administration methods (paper-and-pencil versions or interviews by a dietitian) [30-32]. Health events are monitored through questionnaires about hospitalizations and medication use as well as via a linkage with the national vital statistics database. In April 2011, 15,000 randomly selected participants among 86,652 individuals included at the time of the study were invited to complete a Web-based questionnaire regarding their motives for participation in the study.
This study was conducted according to guidelines laid down in the Declaration of Helsinki, and all procedures were approved by the Institutional Review Board of the French Institute for Health and Medical Research (IRB Inserm no: 0000388FWA00005831) and the Commission Nationale Informatique et Libertés (CNIL no: 908450 and no: 909216). Written electronic informed consent to participate in the study was obtained from all participants.
Motives for Participation
Participants were asked, “Would you have participated in the NutriNet-Santé study if it were not Internet-based?” (response options: yes, no, I don’t know). We also asked the participants, “What was your main reason for participating in the NutriNet-Santé study?” The response options for the different motives were classified into 2 general categories: (1) intrinsic motives for participation, including, to help advance public health research on chronic disease prevention, to help advance nutrition research, to receive regular scientific information about health and nutrition, out of curiosity, to belong to a group, or other motives and (2) extrinsic motives, including in response to the call from the media, from a close friend/associate, or from a medical provider. Finally, we asked participants, “Is the fact that the study is exclusively funded by public sources important for your participation?” (response options: very important, important, not very important, not important).
Assessment of Individual Characteristics
At baseline, sociodemographic, lifestyle, and health characteristics were self-reported. Participants indicated their alcohol consumption frequency and quantity over the previous 7 days. Alcohol intake was calculated by multiplying the alcohol content (ie, percentage) of each beverage (wine, beer, spirits, and cider) by the standard ethanol weight content. Body mass index (BMI) was assessed using self-reported height and weight. Status regarding type 2 diabetes, hypertension, and hypercholesterolemia was provided by participants by answering the following question: “Have you been or are you currently being treated for type 2 diabetes / hypertension / hypercholesterolemia?” If the participant answered yes, he/she completed the information by self-reporting the year of diagnosis and current use of medication.
The present analyses focused on data from a random sample of participants in the NutriNet-Santé cohort who had completed the questionnaire assessing their participation motives and who had no missing sociodemographic, lifestyle, anthropometric, or health status data. These characteristics were compared between participants included in our analysis and those who had stopped participating within 6 months after their enrollment (calculated from the date of the last connection on the website), using a chi-square goodness-of-fit test. The possible reasons for participation were grouped into the following 4 categories: (1) to help advance public health research on chronic disease prevention, (2) to help advance nutrition research, (3) in response to the call from the media, from a close friend/associate or from a medical provider, and (4) other motives (ie, to receive regular scientific information about health and nutrition, out of curiosity, to belong to a group, and other). Perceptions/attitudes toward the public funding of the study were categorized into 3 groups: very important, important, and not important.
According to French recommendations , male drinkers were categorized as abstainers and irregular consumers (once a week), moderate (0-30 g alcohol/day), or heavy drinkers (30 g alcohol/day), and females as nondrinkers (0 g alcohol/day), moderate (0-20 g alcohol/day), or heavy drinkers (20 g alcohol/day). Normal weight, overweight, and obesity were defined according to the World Health Organization classification for BMI, as BMI 25 kg/m2, 25≤ BMI 30 kg/m2, and BMI ≥30 kg/m2, respectively . Gender, age (≤25, 26-35, 36-45, 46-55, and 55 years), marital status (married or living with a partner, single/divorced/widowed), having at least 1 child at home, education (elementary school, secondary, college graduate, and advanced degree), occupational category (managerial staff, farmers/self-employed, intermediate profession, employees/manual workers, and never-employed/homemaker), type of area of residence (rural, semiurban 20,000 inhabitants, urban 20,000-100,000 inhabitants, urban ≥100,000 inhabitants, Paris metropolitan area), smoking status (never smoker, former smoker, current smoker), alcohol consumption, BMI, self-reported type 2 diabetes, hypertension, and hypercholesterolemia are presented in a frequency/percent format for the whole sample. Multivariate associations between the individual characteristics and the motives for participation (participation motive related to the advantages of the Internet, reasons for participation, and attitudes about public funding) were assessed using multinomial logistic regression. Reference category used in the analysis of the associations between participation motive related to the advantages of the Internet and individual characteristics was yes. For the analysis regarding reasons for participation, the reference category was other motives, and for those concerning attitudes about public funding the reference was not important. In each multivariate model, the explanatory variables were adjusted for each other. Odds ratios (OR) and 95% confidence intervals (CI) are reported. Significance tests were 2-sided with a P value set at .05. A more conservative P value of.01 was also used for estimating the robustness of the results. Statistical analyses were performed using SAS software version 9.3 (SAS Institute Inc, Cary, NC, USA).
A total of 6556 of 15,000 persons completed the motives questionnaire (ie, 43.71% of the randomly invited cohort participants). We excluded 61 individuals with missing data regarding the socioeconomic characteristics, 135 participants with missing data regarding weight or height, and 11 participants with missing data regarding alcohol consumption; therefore, data from 6352 participants was available for analysis. At the time of the administration of the questionnaire about motives, the mean duration of participation in the cohort for the participants included in this analysis was 20 months (SD 4.00) and the median was 23 months (range 1-24). Characteristics of the sample are presented in Table 1.
Compared with nonrespondents (among the 15,000 contacted participants), the percentages of individuals older than 55 years and of managerial staff were higher among participants included in this analysis, whereas the percentage of individuals with at least 1 child at home was lower (data not shown). Compared with participants who stopped participating within 6 months after their inclusion in the cohort (mean duration of participation: 3 weeks after inclusion, SD 1 week), the percentages of individuals older than 45 years, of married persons, managerial staff, persons with high educational level, individuals who reported hypertension, and those who reported hypercholesterolemia were higher among participants included in this analysis, whereas the percentages of individuals with at least 1 child at home, manual workers/employees, infrequent alcohol consumers, smokers, and obese individuals were lower (Table 1).
Among participants, 46.45% (2951/6352) reported that they would not have enrolled had the study not been conducted on the Internet, whereas 28.75% (1826/6352) were not sure (Table 2).