Abstract
BACKGROUND
Internet-based educational interventions may be useful for impacting knowledge and behavioral change. However, in AD prevention, little data exists about which educational tools work best in terms of learning and interest in participating in clinical trials.
OBJECTIVES
Primary: Assess effectiveness of interactive webinars vs. written blog-posts on AD prevention learning. Secondary: Evaluate the effect of AD prevention education on interest in participating in clinical trials; Assess usability of, and user perceptions about, an online AD education research platform; Classify target populations (demographics, learning needs, interests).
DESIGN
Observational
SETTING
Online
PARTICIPANTS
Men/Women, aged 25+, recruited via facebook.com
INTERVENTION
Alzheimer’s Universe (www.AlzU.org) education research platform
MEASUREMENTS
Pre/post-test performance, self-reported Likert-scale ratings, completion rates
RESULTS
Over two-weeks, 4268 visits were generated. 503 signed-up for a user account (11.8% join rate), 196 participated in the lessons (39.0%) and 100 completed all beta-testing steps (19.9%). Users randomized to webinar instruction about AD prevention and the stages of AD demonstrated significant increases (p=0.01) in pre vs. post-testing scores compared to blog-post intervention. Upon joining, 42% were interested in participating in a clinical trial in AD prevention. After completing all beta-test activities, interest increased to 86%. Users were primarily women and the largest category was children of AD patients. 66.3% joined to learn more about AD prevention, 65.3% to learn more about AD treatment.
CONCLUSIONS
Webinar-based education led to significant improvements in learning about AD prevention and the stages of AD. AlzU.org participation more than doubled interest in AD prevention clinical trial participation. Subjects were quickly and cost-effectively recruited, and highly satisfied with the AD education research platform. Based on these data, we will further refine AlzU.org prior to public launch and aim to study the effectiveness of 25 interactive webinar-based vs. blog-post style lessons on learning and patient outcomes, in a randomized, within-subjects design trial.
Keywords: Alzheimer’s prevention education, Alzheimer’s education, neurology education research, Alzheimer’s patient education
Introduction
Internet-based educational interventions could reduce the global burden of disability of dementia due to Alzheimer’s disease (AD). Determining the effects, ideal timing, and costs of behaviors and disease-modifying interventions to prevent AD throughout the lifespan represent important aims of current and future prevention research (1–3). To answer these questions, AD prevention trials will require large cohorts of asymptomatic subjects of various ages, followed over many years, assessed within multiple domains (4). Internet-based education could help to address several major challenges to AD prevention research, specifically by 1) enabling behavioral modification, 2) increasing recruitment into prevention trials, and 3) facilitating earlier diagnosis. Advantages to internet-based tools include large audience reach and access where local support is insufficient.
However, there remains significant debate regarding effectiveness and efficiency of online health education programs (5, 6). Within neurology specifically, there is very little high quality evidence of demonstrably effective neurology education (7). No prior rigorous studies have compared strategies for disseminating recent AD advances (8). Also, limitations exist with all current measures of AD knowledge, including out-datedness and limits in scope (9). This raises many unanswered questions. It is unclear which types of online educational tools are most effective for learning about AD prevention. Even if high-quality, effectiveness-proven, online educational interventions were developed, it is uncertain if they would be utilized. Nor is it known whether learning about AD prevention leads to meaningful changes in knowledge and beliefs that promote desirable intentions and behaviors (e.g., changing a health-promoting lifestyle pattern, joining a clinical trial, speaking to a doctor about memory symptoms). Most importantly, effects on clinical outcomes by educational interventions have not been demonstrated (10).
These are critical research gaps because a better understanding of the comparative effectiveness of Internet-based strategies for AD prevention education could lead to a more efficient use of resources and represent a powerful, low-risk tool in the AD prevention armamentarium. Also, understanding how education influences beliefs in specific populations could help to address socioeconomic disparities in AD prevention research recruitment. In the U.S., the National Plan to address AD identified educating and informing the public about AD as one of five key priorities (11).
To address unmet educational needs of individuals at risk for AD, and patients across the three stages of AD (pre-clinical AD, mild cognitive impairment due to AD, and dementia due to AD) we built Alzheimer’s Universe (www.AlzU.org). AlzU.org provides a technological platform to offer current and comprehensive evidence-based educational content, while also providing the tools necessary to study their effectiveness. Assessment is facilitated via a customized AD learning management system (LMS) and database (built within AlzU.org), while also integrating features from an AD clinical research tool, called the AD-Nutrition Tracking System (AD-NTS) (12), which records longitudinal lifestyle patterns and can be used to evaluate outcomes. AlzU.org serves as a repository of educational materials, and education research tool with the capability to randomize users to different learning methods, and track users’ learning based on lessons viewed, lessons completed, and learning outcomes. When users create an account, a welcome email is sent and they then choose an avatar image, which is effective in the context of behavioral change (13).
In this initial study, we performed a randomized trial comparing learning outcomes using two different types of dissemination formats (webinar vs. traditional blog post) and we report initial usability/feasibility of key platform components (listed in Table 1). We hypothesized that a more interactive format for delivering identical content would lead to higher increases in AD knowledge quiz scores. We explored whether participating in Internet-based AD learning activities would affect not only knowledge, but also behavioral intent (willingness to enroll in an AD prevention trial). Our hypotheses were based on research suggesting that interactive applications may engender deeper learning than more traditional formats (14–16) and on validated theories of health-related behavior change, which posit that a significant proportion of human behavior intent is rooted in pre-existing knowledge (17, 18). We chose a randomized design in order to test for a true causal effect of the type of dissemination format on learning outcomes.
Table 1.
AlzU.org activities included in beta-testing
Components and Approximate Length to Complete |
---|
1. Introductory Survey (5 minutes) |
2. Introduction to Alzheimer’s Universe module (5 minutes) - overview of website, education research study, and instructions |
3. Introduction to the Brain module (5 minutes) - overview of terminology used in lessons |
4. Lesson 1a: AD Statistics & Public Policy (8 minutes) |
5. Lesson 1b: Stages of AD (based on the 2011 NIA/AA Criteria, 9 minutes) |
6. Promotional Videos - Video #1 (60 seconds, highly interactive) - Video #2 (90 seconds, less interactive) |
7. AD-Nutrition Tracking System (AD-NTS) - AlzU.org-integrated tool to facilitate outcomes research of lifestyle behaviors |
8. Post-Survey (5 minutes) |
Individuals may benefit from rigorously tested educational methods highlighting currently available evidence-based interventions, and those yet to come. It can take 15–20 years for knowledge generated by randomized controlled trials to be incorporated into standard care (19). Ultimately, more effective dissemination of effectiveness-proven educational tools, in parallel with scientific advances toward AD prevention, could facilitate earlier identification of at-risk individuals, increase enrollment into prevention trials, and promote behavioral change that could significantly influence clinical outcomes.
Methods
IRB-approval was obtained from Weill Cornell Medical College
Curriculum development: A multi-disciplinary team of four Neurologists (two with sub-specialization in AD, two with additional training in medical education/research), and a Doctor of Nursing Practice developed an outline for an evidence-based, comprehensive 25-lesson AD curriculum intended for the broad range of AD stakeholders (e.g., individuals at risk, mild AD dementia patients and their caregivers). The first two of these lessons focused on fundamental concepts of AD prevention, including an overview of AD epidemiology and public policy (Lesson 1a) and defining the three stages of AD (Lesson 1b). These were the only lessons launched during the beta-testing phase.
Each lesson (~1500 words) was edited by a professional medical writer with experience in lay public education, and read by four lay persons, two in each of the anticipated corresponding average age groups to be recruited (35–45 and 55–65 y/o family members or caregivers of AD patients). Feedback was obtained, lessons were revised, and a timed reading was performed.
Once lesson content was finalized, each lesson was further refined in two distinct ways, albeit with identical content: 1) a discrete text and infographic-based written lesson (in the form of a “blog-post”), and 2) an interactive e-Learning web-module version of the identical content. Written blog posts mirrored those found on commonly-read sites dedicated to AD (a common source of on-the-fly public education), and included two infographics per lesson. Each format was as close as possible in duration in minutes (viewing vs. reading times, +/− 30 seconds) with a goal average length of 5–9 minutes each. Prior to being converted into a webinar, the content was storyboarded by an instructional designer, and reviewed by two Neurologists. Webinar lessons were made highly interactive, capitalizing on the strengths of the e-Learning design software Articulate 2013, which has a myriad of interaction styles, periodic intra-content quiz questions, voiceovers and graphics. Assertion-evidence structure of slide design and best practices for online education were followed (20).
Two additional modules were developed and beta-tested. ‘Introduction to the Brain’ was created to standardize pre-course knowledge of basic terminology and familiarize users with webinar navigation. ‘Introduction to Alzheimer’s Universe’ was created to serve as an instructional overview for users, and to improve buy-in and retention by emphasizing their potential contributions to AD education research.
Assessment measures: Prior to completing any of the beta-testing activities, a pre-survey collected basic demographic information, health and lifestyle patterns (e.g., height, weight, exercise and dietary patterns), computer use patterns, interests and perceived knowledge about clinical trials, and the 30 True/False question Alzheimer’s Disease Knowledge Scale (ADKS), which was previously validated in both laypersons and healthcare professionals (21, 22).
Primary outcome measure: Prior to and after completing Lessons 1a and 1b, six content-aligned, previously unstudied, multiple choice questions were asked to assess AD prevention knowledge: Q1 – Identify duration of time between start of AD pathology prior to symptom onset; Q2 – Recognize primary goal of early AD diagnosis; Q3 – Define % of dementia attributed to AD; Q4 – Differentiate between dementia due to AD (stage 3) and Stages 1/2; Q5 – Define symptoms of MCI due to AD (stage 2); Q6 – Define symptoms of pre-clinical AD (stage 1). MCQs were written by experienced question writers according to item-writing guidelines by the American Academy of Neurology (AAN) and American Board of Psychiatry and Neurology (ABPN), by Neurologists who serve on AAN/ABPN item-writing committees.
Secondary outcome measures: After completing beta-testing activities, a post-survey evaluated Likert-scale ratings on perceived likelihood of participating in clinical trials for AD prevention and/or treatment, website usability parameters, and satisfaction with beta-test components.
Users were also asked to join and use the AD-NTS (www.alzheimersdiet.com/2014), an internet-based platform that allows users to track information relevant to AD management online (e.g., medication, nutrition, biomarkers, exercise) (12). The AD-NTS was redeveloped into an integrated ‘AD-NTS Alzheimer’s Universe Edition’. User feedback about this online nutrition tracking system and lifestyle management tool was also assessed. When AlzU.org fully launches, users will be asked to use this tool once per week to voluntarily record lifestyle metrics (exercise duration, weight, dietary patterns). An API communicates between the relational databases in AD-NTS/AlzU.org. Exercise duration (objective as measured by minutes/week), weight (objective), and dietary patterns pre- vs. post-intervention will be compared between subjects assigned to webinar vs. blog-post interventions. Relationships between subtopic MCQ scores on exercise and nutrition with objective changes recorded will be assessed.
Study design, enrollment and retention: Subjects were recruited from Facebook.com using page posts asking users to volunteer to beta-test AlzU.org. Posts were promoted with targeted advertising in the US, age 25+ with previously expressed interest in “Alzheimer’s disease,” or who had “liked” the Alzheimer’s Association page. Targeted advertising was divided in several campaigns with different promotional taglines, using “Cost Per Click” and “Optimized for Engagement” settings in Facebook Advertising Manager. The goal was to advertise until 100 users completed all beta-testing steps (Table 1) and post-survey (<1 hour, total).
Enrollment: To maximize enrollment and continued participation, we included five “phases” of lesson completion, each with receipt of a subsequent “reward” via a token economy system. For example, a bronze electronic medal after Phase 1 (the 2 introductory lessons 1a and 1b), and after 25 lessons, a final medal of completion and “Certificate of Completion” is sent via email, and a donation is made to AD research on their behalf.
Randomization: Upon enrollment, subjects were randomized (50/50) using a random number generator to receive Lesson 1a as either a blog-post or a webinar, and Lesson 1b in the alternate form.
Website, Learning Management System, and Database Development and Integration: AlzU.org platform was created using open source PHP scripting language in conjunction with a MySQL database. A content management system (FUEL CMS) facilitated basic webpage edits by the study team, rather than having to relying on pay-per-hour developer time. Tracking code was embedded in all pages in order to be able to view visitor paths and click through on the site (via statcounter.com). Users may join by creating an account with their email address and a password. An avatar image is selected, welcome email sent, and the user is logged in to their customized user portal. All MCQ questions are stored on AlzU.org, and an administrative portal for study investigators shows aggregate user statistics, with data export functions.
Pre- and post-surveys are otherwise managed by Survey Monkey (www.surveymonkey.com).
All webinars are stored on Articulate Online (www.articulate-online.com) which has additional tracking features, automated tracking tools, and records number of slides viewed/completion rates.
The AD-NTS Alzheimer’s Universe edition is built in a similar fashion to AlzU.org using an open source API from Google Charts to produce graphical data reports. All data and overall platform interaction use SSL-technology to provide data security. All communication is encrypted using 256-bit SSL-encryption. Overall server and application infrastructure is built using LAMP stack and open source PHP framework and technology.
For the AD-NTS, a personalized coaching algorithm allows for real-time user feedback based on established parameters. Direct interface with social networking software allows users to derive support from other members of an online AD community.
Results
Analyses
Repeated-measure analyses of variance were used to test the interaction between time (Pre vs. Post) and lesson type (Webinar vs. Blog) for Lessons 1a and 1b (n=196). Paired samples t-tests with manual alpha correction were used to test significant changes between lesson types for each lesson.
Primary Outcome Measure
For Lesson 1a, there was no interaction between time and lesson type, p=0.20. However, for Lesson 1b, there was a time by lesson type interaction, such that the number of correct answers (of 3) increased significantly more for individuals receiving information via the Webinar vs. Blog, F1,209=6.77, p=0.010. See Table 2 & Figure 1.
Table 2.
Number of Correct Responses for Lessons 1A and 1B
Mean | Stand Dev | Pre to Post Change | |
---|---|---|---|
Lesson 1A Pre | |||
Blog | 1.06 | 0.75 | |
Webinar | 1.21 | 0.87 | |
Lesson 1A Post | |||
Blog | 1.79 | 0.94 | 0.73* |
Webinar | 1.76 | 0.93 | 0.55* |
Lesson 1B Pre | |||
Blog | 1.78 | 1.13 | |
Webinar | 1.52 | 1.00 | |
Lesson 1B Post | |||
Blog | 1.86 | 1.13 | 0.08 |
Webinar | 1.95 | 1.10 | 0.43* |
Figure 1.
Individuals receiving information via Webinar vs. Blog showed a significantly greater improvement
Secondary Outcome Measures
Interest in Clinical Trial Participation
Upon joining AlzU.org, 42% were interested in participating in a clinical trial in AD prevention. After completing all beta-test activities (Table 1), 86% were interested in participating in a clinical trial in AD prevention.
Recruitment
From April 5 – April 18, 2014, subjects were recruited using page posts on Facebook.com. Ad performance was continually assessed with highest performing ads continued, and lowest performing ads stopped. $706 generated 1291 clicks to www.AlzU.org/SignUp. An additional 2977 visits came from a variety of other sources, capitalizing on the virality component of social media (e.g., post shares), as well as user forwarding of welcome emails (sent after joining) to family/friends, word of mouth, and Facebook News Feed announcements to 30k users who “liked” www.facebook.com/alzheimersdisease (all at no additional direct cost). Advertising budgets were titrated and eventually stopped once the pre-set goal of 100 users completing all beta-testing steps was met.
Response rates
Of 4268 unique visits to AlzU.org, 503 signed up for a user account (11.8% join rate). 412 completed at least one beta-testing step (82%), 269 completed the baseline survey (53.5%), 196 participated in the lessons (39.0%), and 100 completed all requested beta-testing steps, including the post-survey (19.9%) which took <30 minutes to complete for 49.3% of users, and 31–60 minutes to complete for 43.7%.
Demographics
Registered users were primarily women (79.8%) and the most common age group was 50’s (43.3%), with a wide range in ages from 30’s to 90’s. The largest single category of users were children of an AD patient (58%), with next largest category having no personal connection to AD, but desiring to learn more (9.9%). 40.2% of users reported High School/Secondary as their highest level of education. 58.2% use the internet >10 hours per week. 29.7% reported exercise <30 minutes per week and the average BMI for all users was 27.3. 42.2% reported that 40–60% of their dietary intake is composed of carbohydrates. See Table 3 for additional results.
Table 3.
Demographics
Statement | Percent |
---|---|
Sex | |
Female | 79.8 |
Male | 19.1 |
Prefer not to say | 1.1 |
Age | |
30’s and below | 5.5 |
40’s | 12.2 |
50’s | 43.3 |
60’s | 21.1 |
70’s | 16.6 |
80’s | 3.3 |
90’s and above | 1.1 |
Relation to AD | |
Child of a person with AD | 58.0 |
No personal connection to AD, but I | 9.9 |
want to learn more | |
Other relative of person with AD | 9.4 |
Spouse or partner of a person with AD | 7.7 |
Friend of a person with AD | 6.1 |
Grandchild of a person with AD | 5.0 |
Person with memory loss, but not AD | 2.2 |
Person with mild AD | 1.1 |
Highest Level of Education | |
HS/Secondary | 40.2 |
Postgraduate degree | 24.1 |
Associate degree | 18.4 |
Bachelor degree | 16.1 |
Prefer not to say | 1.1 |
Exercise Habits (per week) | |
0–30 min | 29.7 |
31–90 min | 25.3 |
>150 min | 20.9 |
91–150 min | 19.8 |
Reason for Joining AlzU.org | |
To learn more about AD Prevention | 66.3 |
To learn more about AD Treatment | 65.3 |
Have/Had a family member with AD | 63.2 |
To learn as much related to AD | 57.9 |
To learn more about AD caregiving | 46.3 |
To learn more about clinical trials | 42.1 |
Knows someone with AD | 23.2 |
Unpaid caregiver of person with AD | 13.7 |
Respondent Ratings – Pre-survey
The most common reason for joining (66.3%) was to learn more about AD prevention, followed by learning more about treatment (65.3%). Over 95% felt there was a great need for AD education efforts and use the Internet to read about health topics. 62% felt unaware of the latest strategies that may reduce AD risk or delay its onset, and 69% felt unaware of the latest AD treatments. 82% were looking forward to learning more about ongoing clinical trials in AD.
Respondent Ratings – After beta-testing complete
The vast majority of users were satisfied with their experience. Approximately 90% expressed they were glad they joined, liked the website, and planned on completing all 25 lessons upon launch. 79% felt they would use the AD-NTS. Users were nearly uniformly more satisfied with the webinar vs. blog-post version of lessons 1a/1b. Completers of all beta-testing steps were similar to pre-survey completers as a whole, although they were slightly more educated (34.6% vs 24.1% Post-graduate degree) and more interested in AD prevention (74.4% vs 66.3%). See Table 4 for additional results.
Table 4.
Average Respondent Ratings Pre and Post-Beta testing
Statement | Agreement Rating (of 5)1 |
---|---|
Pre-Survey | |
There is a great need for AD education | 4.8 |
I use the Internet to read about health topics | 4.5 |
I know where to find high quality information about AD | 3.5 |
I am aware of the latest AD treatments | 2.7 |
I am aware of strategies that may reduce AD risk or delay its onset | 3.1 |
I am aware of the research behind diet, AD and memory loss | 3.2 |
I am aware of the research about exercise, AD and memory loss | 3.6 |
There are studies that suggest that diet changes may help for AD and memory loss | 3.4 |
There are studies that prove exercise may reduce AD risk | 3.6 |
I follow an overall healthy diet | 3.1 |
I follow a “Brain-Healthy” diet | 3.0 |
I am very good at using computers | 4.1 |
I plan on using the online AD-Nutrition Tracking System (AD-NTS) | 3.4 |
I am looking forward to learning more about ongoing clinical trials in AD | 3.9 |
I am interested in participating in a clinical trial in AD prevention or treatment for myself | 3.3 |
I am interested in having a family member or friend participate in a clinical trial for | 3.4 |
AD prevention or treatment | |
I plan on using the Ask the Experts option, where I can submit my own questions | 3.6 |
Post-Survey | |
I am glad I joined AlzU.org | 4.6 |
I liked the AlzU.org website | 4.5 |
I learned a great deal of information | 4.5 |
I plan on using AlzU.org when it fully launches | 4.6 |
I plan on completing all of 25 Lessons when available | 4.6 |
I could see myself using the AD-Nutrition Tracking System (AD-NTS) | 4.4 |
I like the organization of the Lesson Menu | 4.4 |
I learned from the Intro to Alzheimer’s Universe module | 4.3 |
I learned from the Intro to the Brain module | 4.2 |
I learned from Promotional Video #1 (60 seconds) | 4.3 |
I learned from Promotional Video #2 (90 seconds) | 4.3 |
I learned from Lesson 1a: AD Statistics & Public Policy | 4.3 |
I learned from Lesson 1b: Stages of AD | 4.4 |
I am interested in participating in a clinical trial in AD for prevention or treatment for myself | 4.4 |
I am interested in having a family member or friend participate in a clinical trial for AD prevention or treatment | 4.2 |
Narrative comments
The majority of users provided comments, and the most common theme expressed great satisfaction with learning about, and having a greater understanding of, the latest three stage classification of AD.
Discussion
In this beta-testing phase of AlzU.org, participants randomized to an interactive webinar lesson about the stages of AD, but not a lesson about epidemiology/public policy, demonstrated significant improvements in medical knowledge about AD prevention when compared to blog-post instruction. While each educational intervention was similar in content and length, interactivity likely led to improved learning outcomes as demonstrated by MCQ performance. Interactivity, one of Pelz’s fundamental elements of success for achieving better online learning outcomes, appeared effective in this tech-savvy group.
The finding that the stages of AD webinar was associated with improved learning, but the AD epidemiology/public policy webinar was not, was an important and unexpected finding. The more factual and less personal/emotional nature of the latter content may have played a role in lowering interest in the material. Even negative emotions such as perceived susceptibility have been shown to enhance learning outcomes (23). Learning about preclinical AD and length of time AD ‘starts’ in the brain before symptoms begin may have affected subjects’ perceived AD susceptibility (one of the key belief constructs that determines behavioral intent), thus raising the “valence” of the lesson. Additionally, in memory theory, personally relevant information is more likely to be stored (24). Aligning with the primary reason for joining AlzU.org (to learn about AD prevention), it is reasonable to suspect that most were less engaged in epidemiology/public policy content, unrelated to how content was delivered. In future studies, it would be important to explore how types of valence elicited by different lessons interact with types of content to influence learning outcomes.
Overall, AlzU.org beta-testers demonstrated increased interest, and greater likelihood to participate, in AD prevention clinical trials. While one of the greatest challenges faced by researchers who conduct clinical trials in AD is both recruitment and retention, online educational strategies may prove to be a rapid, and cost effective means of increasing screening and enrollment (25). In fact, the most common reason for joining was to learn more about AD prevention, followed by AD treatment. Participation and response rates were adequate, likely a result of subjects being highly motivated to learn due to the significant personal toll of the disease. The vast majority was highly satisfied with their experiences on AlzU.org, and represented a wide age range. Children of AD patients were the most common users, which represents an easily accessible group of potential participants for AD prevention trials. Users may opt-in to receive ongoing updates about the latest clinical trials suitable for them. Ongoing contact with this highly-targeted and motivated audience may lead to more effective subject recruitment.
There is relatively little prior evidence of demonstrably effective neurology education with which to compare our results. Gaps have been uncovered in the quality of educational resources available for AD patients/caregivers in the subject of nutrition (26, 27). One RCT focused on undergraduate medical education (12), and another on using health information technology to improve targeted delivery of AD educational tools for patients and healthcare providers (26). The use of technology for educational behavior therapy interventions was studied in moderate AD and demonstrated improvements in ADL performance and mood (7). A comparison of a standard website vs another geared for early dementia found that reduction of click choices helped participants focus on AD content (28). Caregivers increasingly turn to the web for eldercare information and support (29) and family caregivers are more technologically savvy than non-caregiver peers (especially web/mobile), and actively seek education (30).
The major limitation of our study was the lack of use of a validated measure for AD prevention knowledge, since one does not yet exist. However, we will use preliminary validity testing to improve our MCQs and then reevaluate with a larger sample size. Validating measures of AD prevention knowledge and beliefs is an extremely important area of future research. By October 2014, as part of U.S. The National Plan to Address AD, the Centers for Disease Control and Prevention plans to identify validated survey questions that can be used at the national, state, and local levels to track awareness and perceptions about cognitive health.
Based on data collected from this initial phase, we plan to further refine AlzU.org and improve content structure/delivery for the remaining 25-lesson curriculum for individuals at risk and patients across Stages 1–3. Upon full public launch, the effectiveness of typical methods for learning about AD (e.g., reading articles on the internet), as compared to a more ‘active’ style of learning via interactive, e-Learning webinars, will be assessed via a large randomized, within subjects design trial. We aim to augment prior research and develop comprehensive, effective, asynchronous, Internet-based, e-Learning curricula that improves patient outcomes (as measured by AD-NTS) and knowledge about AD. This research will provide critical information on how to most effectively disseminate information about AD to those at risk and those already diagnosed, as well as contribute to the broader corpus of research on health education guidelines and theory. Development of easily accessible, effectiveness-proven educational tools to aid in AD management have the potential to positively impact millions of individuals with AD, and many more who are at risk.
Expansion of an Internet-based AD education research platform is a key step towards achieving AD prevention priorities. If one type of educational strategy demonstrates superiority over another, or if certain learner types respond better than others, this will set the stage for better targeted, hypothesis-driven educational interventions. Longer-term goals would be to integrate the most effective educational tools into the electronic health record for more reliable and timely delivery to patients at risk, or those diagnosed with AD. Ultimately, a validated platform that enables randomized trials of hypothesis-driven educational interventions could reduce barriers to early diagnosis and preventative care while also better defining strategies to increase recruitment into AD prevention clinical trials.
Acknowledgments
The Authors would like to thank Arvin Zarookian for logo and graphic design and assistance with marketing activities; Katherine McGuire for video production, editing and audio production; Drs. Joshua Richardson, Matthew Fink, Dale Atkins, Daniel Cohen and Lyuba Konopasek for advice, input on study design, content review and support; Paula Spencer Scott and William Pluta for content review and support; Reza Khan and Pamela Schwilk from Evolvinx, Inc for assistance with design, maintenance and integration of the AD-Nutrition Tracking System; Miguel Hernandez from Grumo Media for guidance on promotional video development; And most importantly, all of the individuals who volunteered their time to become beta-test users of AlzU.org.
Funding: Provided via philanthropic support (proceeds from the 1st Annual Memories for Mary fundraiser, organized by Mr. David Twardock, and contributions from grateful patients of the Alzheimer’s Prevention Clinic, Weill Cornell Memory Disorders Program), via an unrestricted educational research grant from Accera, Inc, and anticipated funding from the 2014 NewYork-Presbyterian Translational Research Grant. The sponsors had no role in the design and conduct of the study; in the collection, analysis, and interpretation of data; in the preparation of the manuscript; or in the review or approval of the manuscript.
Footnotes
Ethical standards: No incentives were given to participants, informed consent was obtained, data were stored securely and kept confidential, and ethical standards were strictly adhered to.
Conflicts of Interest: Dr. Isaacson has received research support from the American Academy of Neurology, student loan payments from the National Institutes of Health Clinical Research LRP, salary support from the McKnight Brain Research Foundation for education research, and unrestricted educational research grant support from Accera, Inc. He has served as a scientific advisor/consultant to Novartis and Accera. None of the other authors have any financial interests, relationships or affiliations relevant to the subject of this manuscript.
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