Type 1 diabetes is a common chronic illness in adolescents, affecting 1 in 400 youths [1]. The racial/ethnicity distribution of Type 1 diabetes affects primarily white youth in the United States. In a series of studies, the SEARCH for Diabetes in Youth research group reported that the prevalence of Type 1 diabetes in youths is approximately 70% white, 22% Hispanic, and 8% black [2-4]. Management of Type 1 diabetes is complex, requiring frequent monitoring of blood glucose levels, symptoms, and carbohydrate intake. Daily insulin treatment (3-4 injections/day or infusion from a pump) as well as meal-to-meal adjustment of insulin dose depending on diet and activity patterns is required [5]. As youth transition to adolescence and take on greater responsibility for their Type 1 diabetes management and decision making, adherence to diabetes tasks often deteriorates [6], resulting in family conflict, psychological distress, and poor metabolic control [7,8].

Psychoeducational programs for youths and family-based programs have shown to be effective in improving psychosocial and diabetes-related outcomes [9-11]. Psychoeducational programs provide education, behavioral skills, and psychosocial support for young people and their families to learn how to optimally manage a chronic illness. However, disseminating and translating research-based programs into clinical care has been challenging because of provider and family time constraints, as well as cost [12].

The Internet and other eHealth technologies offer a platform for improving the dissemination and accessibility of psychoeducational programs for youth with Type 1 diabetes. Access to the Internet is increasingly available nationwide, with 94% of youth online regularly [13]. Approximately 90% of young people of all demographic and socioeconomic categories have access to the Internet [13]. Thus, eHealth interventions have the potential to reach a diverse group of youths. Programs provided on the Internet can include psychoeducational content, interactive learning, immediate feedback, and social networking [14,15].

Psychoeducational programs delivered via computer-based Internet access have demonstrated efficacy in youths with various chronic illnesses, leading to improved knowledge, symptoms, health outcomes, and quality of life [14,15]. With respect to youths with Type 1 diabetes, an eHealth self-management program with a focus on problem solving and social networking demonstrated improved self-management and problem solving in youth who completed the program compared to a control group [16]. An Internet coping skills training program, developed by our research team, did not demonstrate differential improvements in metabolic control and diabetes-related outcomes compared to an Internet diabetes education program, but youths in both groups reported significantly increased self-care autonomy, higher diabetes self-efficacy, and improved overall quality of life over time [17]. The Internet, therefore, represents a potentially efficient and effective delivery platform for psychoeducational programs for youths with Type 1 diabetes and other chronic illnesses. When evaluated, high satisfaction with eHealth programs have also been reported [18].

Despite the numerous benefits of eHealth programs for youths with chronic illnesses, concerns have been raised about the “digital divide” and Internet access for youths of diverse race and ethnicity and those living in low-income families. Although the vast majority of youths are online, access is higher in white youths and those who live in high-income families [13]. White youths and youths in high-income families are more likely to have online access at home (96%) and go online more frequently compared with black youths (92%), Hispanic youths (87%), and youths from low-income families (86%) [13]. A positive relationship between socioeconomic status and computer-based Internet use has been demonstrated in diverse middle school students [19] and a diverse pediatric clinic population [20].

Challenges of recruiting youths of diverse race and ethnicities for research are well established [21,22]. Issues about the perceived value of research, access to research for families of all strata of society, and cumbersome informed consent procedures have been documented [22]. However, little is known about the recruitment process and yield of diverse samples in Internet research with youths who have a chronic illness.

In addition to concerns regarding access to eHealth research, participation in eHealth programs has varied considerably across studies [14]. For example, in an eHealth program for youth with asthma, participants did not complete self-monitoring on 60% of study days [23]. In an eHealth program for depression, only 30% of youths completed 50% or more of the program modules [24]. In the eHealth problem-solving program for youth with Type 1 diabetes, the mean number of modules completed was 5.22 (of 8), with only 63% of youths completing all modules [18]. Participation in eHealth programs for youths typically decreases over the course of the study [23,25] and higher participation has been associated with more positive outcomes. For example, school-aged youths who had greater participation in an eHealth obesity prevention program demonstrated improved outcomes compared to youths with less participation [26]. A structured environment (ie, school vs home) may improve youth participation in eHealth programs. Youths who participated in a school-based eHealth program for depression had almost a 10-fold higher completion rate for modules and program exercises compared to youths who participated in the same program delivered as open access online [27].

Factors associated with eHealth program participation have begun to be identified. Girls have demonstrated greater participation compared to boys [18,27]. Increased depressive symptoms may also influence participation, although this effect may vary depending on the characteristics of the program, severity of symptoms, and the type of chronic illness. For example, in one study evaluating an eHealth program for depression treatment, less participation was reported in youths with higher depressive symptoms at baseline [24]. In contrast, in another study evaluating an eHealth depression prevention program, the authors reported that youth with higher depressive symptoms had greater participation in the program [28].

In summary, recruitment, participation, and satisfaction with eHealth programs have the potential to influence eHealth program outcomes and generalizability of results. Yet, little research has been undertaken to systematically evaluate the recruitment, participation, and satisfaction of eHealth programs. Therefore, the purpose of this study was to compare the demographic and clinical characteristics of youth with Type 1 diabetes on recruitment, participation, and satisfaction with 2 eHealth psychoeducational programs. Specifically, recruitment, participation, and satisfaction were compared by age, gender, race/ethnicity, household income, metabolic control, and depressive symptoms.

The current study is a secondary analysis of data from a clinical trial evaluating the effect of an Internet coping skills training program (TEENCOPE) compared to an Internet diabetes health education program (Managing Diabetes) for youth with Type 1 diabetes. Each program consisted of 5 sessions with content tailored to adolescents with Type 1 diabetes. TEENCOPE used a cast of ethnically diverse characters (youth with Type 1 diabetes) and a graphic novel format to model common problematic social situations (ie, parent conflict) and different coping skills to solve the problems (Figures 1 and 2). Managing Diabetes used visuals and a highly interactive interface that allowed adolescents to actively problem-solve diabetes self-management situations (Figure 3 and 4) [29].

A convenience sample was recruited from 4 university-affiliated clinical sites that included Children’s Hospital of Pennsylvania, Philadelphia, PA; University of Arizona, Tucson, AZ; University of Miami, Miami, FL; and Yale University, New Haven, CT. Inclusion criteria were: youth diagnosed with Type 1 diabetes for at least 6 months, aged 11 to 14 years, with no other significant medical problem, school grade appropriate to age within 1 year, able to speak and write English, and access to high-speed Internet at home, school, community, or clinic.

The 2 psychoeducational eHealth programs for youth with Type 1 diabetes in our study were able to reach a diverse sample, reflective of national prevalence estimates. Overall, there was high participation and satisfaction with the 2 programs. Given the huge influx of eHealth interventions designed for pediatric populations, it is important to understand who they are likely to reach and benefit. Results from the current study highlight demographic differences in recruitment/enrollment, participation, and satisfaction with psychosocial and educational eHealth programs for youth with Type 1 diabetes. Results indicate that black, Hispanic, or mixed race/ethnicity youth with Type 1 diabetes are less likely to enroll in Internet-based research than white youth; thus, creative recruitment approaches are needed. Lower-income youth were also less likely to participate than higher-income youth, possibly due to problems with access. However, once enrolled, black, Hispanic, or mixed race/ethnicity youth and lower-income youth with Type 1 diabetes were as highly satisfied or more satisfied with the eHealth programs as white youth and higher-income youth. These results support the idea that eHealth programs designed for pediatric populations have the potential to reach diverse youth and be appealing to them.

Overall, the rate of enrollment in the study (63%) was average for youth psychoeducational research, which ranges from 49% to 73% [10,21]. The majority of youth who declined participation at the point of contact indicated that they were not interested in the study. As we have shown in a previous study, youth and their families may be less likely to participate in a preventive intervention of this type before the onset of puberty when poorer metabolic control is common [31]. Very few youth indicated that lack of Internet access was a reason for not participating, but they may not have wanted to disclose their lack of Internet access to the clinical or research personnel.

There were no differences in recruitment category with respect to gender or age. There were, however, significant demographic differences in enrollment, with black, Hispanic, or mixed race/ethnicity and lower-income youth more likely to passively refuse, and white youth more likely to enroll. It is possible that black, Hispanic, or mixed race/ethnicity and lower-income youth consent to take part in studies because they feel pressure to please a respected individual (eg, health care providers, research staff) [32], rather than out of a desire to participate. Alternatively, given that black, Hispanic, or mixed race/ethnicity and low-income youth are less likely to be online than white youth [13], youth who passively refused may have had problems with Internet access. In addition, some of the families who had Internet service at the time of enrollment may have later lost or canceled the service because of financial difficulties. These problems with passive refusal (ie, youth who consented to participate but never completed baseline data) are similar to another Internet study with a pediatric population that also was unable to contact some youth after initial consent [33]. Rates of passive refusal in other studies evaluating an eHealth program in youth have ranged from 13% to 40% [18,34-36].

The pattern of results for participation is somewhat different from enrollment; there were no significant differences in race/ethnicity for participation, but there was a significant difference by income. Youth in the lowest income category (family income <US $40,000 year) were significantly less likely to participate than those in the higher-income categories. Again, lower levels of participation may reflect problems with Internet access. Previous studies have shown that lower-income families are less likely to have a home computer and home Internet access [20]. Similarly, lower-income youth report going online less often than higher-income youth; 39% of lower-income teens go online daily vs 75% of higher-income teens [37]. Further, teens from lower-income families are more likely to use the Internet at school, whereas 99% of those from higher-income families access the Internet at home [37]. Thus, it may be less convenient for lower-income teens to participate in eHealth programs than higher-income teens.

Providing options for participation in eHealth programs at schools and clinics may enhance participation. Yet, none of the participants in this study took advantage of Internet access at the clinic for program participation, despite it being offered. Development of eHealth programs for youth in the future may need to use multiple platforms, such as the Internet and smartphones. Currently, 75% of adolescents have cell phones [37]. Latino and black youth are more likely than white youth to access the Internet by cell phone [37]; thus, eHealth programs that are able to be viewed on both the Internet and smartphones may reach more youth of diverse races/ethnicities.

A number of eHealth programs provided on mobile phones with text messaging or smartphone applications have been developed for youth with Type 1 diabetes to enhance blood glucose monitoring [34,38,39] and/or diabetes treatment [40-42]. Improvements in blood glucose monitoring [34] and adherence [41] have been demonstrated. Metabolic control improved only in programs that provided additional components, such as intensive diabetes treatment [41] or behavioral contracting [38]. Studies have primarily been small, 1-group pilot studies, and participation and satisfaction have not been consistently reported. When reported, the reach of the program to youth of diverse races/ethnicities has been low [41], participation has been variable [34,40], and satisfaction has been high [34,40].

Limited literature is available on strategies to promote greater engagement of youth in behavioral interventions, with even less information on the use of the Internet and mobile technologies for minority and low-income youth. Designers of eHealth programs have identified that involving targeted users in the design and development of programs is critical to enhancing user experience and acceptability [43]. It has been proposed that 80% of the impact of an eHealth program is determined during the design phase [44]. Thus, including youth of diverse races and ethnicities in the design and development of eHealth programs appears critical. The use of social media has also been successful in engaging diverse youth in health promotion content by using interactive blogging, connection with others, and creative expression [45]. From the perspectives of African American youth, some evidence supports the value of parental modeling and social support to encourage participation in certain behavioral interventions [46]. Parents of black, Hispanic, or mixed race/ethnicity youth may be key to enlisting their young adolescents’ interest in future eHealth programs. Researchers need to understand parental views on the advantages, safety, and potential health benefits to having their adolescents participate. Novel approaches for obtaining information on parental level of enthusiasm regarding a proposed eHealth investigation through in-person or Skype focus groups could aid in the design of future investigations with minority groups.

Interestingly, our results on satisfaction indicated that black, Hispanic, or mixed race/ethnicity youth and lower-income youth were more satisfied with the program than higher-income and white youth. These high levels of satisfaction are likely a reflection of the inclusion of a culturally diverse “cast” of characters in the program and developmentally appropriate topics and examples. Addressing cultural issues has been shown to foster adherence [47]. Further, we included input from teens at every stage of the program development and paid careful attention to the usability of the program [48]. Finally, we kept text to a minimum, which is more appealing to youth, especially those with low health literacy [49]. Girls were also more satisfied than boys, which may reflect their interest in behavioral topics (ie, interpersonal skills). It has also been hypothesized that girls may respond more to a cognitive-behavioral program based on social learning theory [50].

Finally, there were differences in participation related to depressive symptoms, such that teens who scored above the clinical cutoff were less likely to participate than those who scored below the cutoff. The presence of depressive symptoms may negatively impact motivation for many youth, which has been shown in a previous study of an eHealth smoking cessation program [27]. Youth with higher depressive symptoms may be more likely to participate in programs that they believe will help with their depression [28].