By Jim Rogalski
After six months of frequent visits to the island, diabetes patients saw their average weight, blood pressure, body mass index (BMI), and HbA1c (a measure of prolonged glucose levels) all drop. They reported feeling greater confidence in their ability to self-manage their disease and came away feeling they had discovered a valuable social support system.
Eye-catching results, for sure, for a chronic disease that afflicts 26 million Americans. Diabetes is notoriously difficult for patients and healthcare providers to control because most of the day-to-day management is tied so heavily to patients’ finding a way to self-manage the disease through diet, exercise, glucose monitoring, and medications.
Diabetes Island is not real in the traditional, physical sense, of course. It’s a small-scale virtual environment created by two Duke University School of Nursing researchers who charged themselves with designing a more effective model of diabetes intervention and management. The model is designed to provide ongoing education and support beyond a periodic visit to a doctor’s office.
Formally known as SLIDES (Second Life Impacts Diabetes Education and Self- management), the project was a two-year, National Institutes of Health-funded pilot study to determine if adults (average age 54) with type 2 diabetes could benefit from an interactive, digital environment in which they attend online seminars and complete tasks within a virtual environment—things like visiting the grocery store and comparing nutrition labels; going to the library to read an instructor-assigned article; or ordering a healthy meal at the virtual restaurant. The SLIDES Program was designed within the popular online multi-user game Second Life.
“We didn’t expect to see such clinically significant changes in the physiological markers because this was such a small study, but we did,” says Principal Investigator (PI) Constance Johnson, PhD, MS, RN, an associate professor of health informatics. “We knew young people would go in (to the virtual world), but we didn’t know how adults would react.”
The age range of the 20 participants in the pilot study was 39 to 72, and only a few had initial difficulty learning to maneuver through the virtual world.
The NIH was so impressed with the results of the pilot study it has awarded Johnson and co-investigator co-PI and Assistant Professor Allison Vorderstrasse, DNSc, APRN, a five-year, $3.2 million grant to conduct an extensive randomized control trial on the feasibility of educating patients and supporting their behavior through a virtual environment. This multi-site study is being conducted with site PI Gail Melkus, EdD, C-NP, a researcher and associate dean for research at New York University College of Nursing.
“We’ll be taking the best of what we learned in the pilot study and bringing it into a more advanced and stable computer platform that will be able to accommodate a lot more participants,” Johnson says. “We want to know if this really changes behavior over time and if people will sustain those positive behavioral changes.”
The new project is called Diabetes LIVE (Learning in Virtual Environments) and will enroll 300 diabetes patients. One-hundred- fifty of the participants will have access to the interactive virtual environment and be able to have online conversations with each other and the educators. The other 150 will have the same support information presented to them but through a standard website instead. It will take just under a year to build the more advanced virtual environment using a robust gaming engine, with July 2014 targeted as the launch date.
VIRTUAL REALITY CHECK
Vorderstrasse, who specializes in chronic diseases, says studies are showing that virtual environments can be successful teaching tools for educating adults.
“The participants in the pilot study told us they got so much out of being able to talk with each other from their homes,” Vorderstrasse says. “They not only learned from the diabetes educators in the classes but from each other as well. This was a very positive finding that really gave us justification and evidence to move it forward.” DUKE NURSING WINTER 2014 19 Baseline 3 months 6 months Clinical Outcomes The results show the average changes in several physiological markers of the patients who participated in the SLIDES Virtual Environment pilot study.
Participants created their own avatars—or computer-generated likenesses—that they moved throughout the fictitious island. It included a pharmacy, health club, community center, restaurant, book and grocery stores, and more. Twice a week, from the comfort of their own homes, participants would meet online for a 45-minute class given by a diabetes educator from the Duke Department of Endocrinology. Participants were able to ask questions, tell their personal stories, and offer tips, advice, and support to fellow participants while having their discussions moderated by a diabetes expert.
All lectures were recorded and could be listened to any time in the virtual community center.
“They could come 24-7, any time they wanted to and catch up or explore all of the resources on the site,” Johnson says.
For instance, the grocery store contained more than 200 items that participants could click on to learn their nutritional value and even get recommendations for more healthy options if they chose, say, potato chips. The bookstore contained books and website links to diabetes information. And the restaurant menu offered detailed nutrition information from popular chain and fast- food restaurants.
“So they learned how to eat fast food in a more healthy way,” Johnson adds. “For example, they can have a Whopper, but they may want to remove one of the buns and hold the cheese and mayonnaise.”
HIGH PRAISE FROM PARTICIPANTS
Aside from some minor audio and video issues with the SLIDES Program that will be corrected in the advanced version, participants found the experience valuable and enjoyable.
“I feel like I’m learning about my diabetes for the first time,” said one participant in a survey. “I am so grateful for how the SLIDES Program has helped me.”
Added another: “A change in my medication and diet that I learned in the SLIDES Program are the main reasons for the dramatic change in my HbA1c. And my cholesterol number has gone down from 213 to 173.”
That type of feedback is golden for the School of Nursing researchers.
“Yes, they could just go to the web for this information, but there are so many options out there it can be daunting,” Johnson says. “All of the content in this program was curated by us. And the social networking aspect of it was extremely valuable to them.”
GOING LIVE IN 2014
The new iteration of the program— Diabetes LIVE—will be built upon a high-tech video gaming platform that will be more stable, accommodate many more participants, and be far more realistic.
“The avatars will be absolutely realistic, right down to the pores of their skin,” Johnson said.
That’s not an insignificant detail. Vorderstrasse said the more realistic the environment is, the more engaged its users will be. She said participants in the pilot study took great care in creating their avatars and even visited the virtual clothing store occasionally to put on new outfits when they knew they would be going to class or visiting the virtual restaurant.
The Diabetes LIVE study also will provide participants with small, electronic monitoring gadgets called FitBits that track steps taken, distance covered, calories burned, stairs climbed, and intensity level.
“We’ll be able to track how much exercise the participants are getting in real life and upload their data to a computer for later analysis,” Johnson said.
Because the social bonding element was so strong in the pilot study, Diabetes LIVE will include small-group assignments like going to the virtual grocery store or restaurant together.
The food might not be real, but the friendships generated and the increased confidence levels are.
“We have to find better ways to reach people and be able to provide them with the ongoing education and support that they need,” Vorderstrasse said. “We can’t keep functioning on the old model of just offering classes at clinics that people can attend if they’re newly diagnosed. This project really seemed to impact them.”
The researchers said data from Diabetes LIVE will begin to be analyzed in 2015.