ARTICLE IN BRIEF
A new study suggests that participation in an online patient portal could help epilepsy patients become more confident in managing their disease.
In-person support and educational groups have long been around to help patients with epilepsy better cope with their condition, but now patients can join online communities that allow them instant access to disease management and tracking tools and forums where they can post questions and exchange information with fellow patients. But do those virtual connections help?
Results of a new study published in the June 17 online edition of Neurology suggest that an online patient portal could indeed be beneficial. The study found that epilepsy patients who used the website PatientsLikeMe for six weeks showed measurable improvement in their confidence and ability to manage their disease.
“The potential for digital educational programs has long been recognized; however, there remains limited evaluation of their effectiveness,” the study authors noted, pointing out that much of the information reported on the benefits of online support groups is anecdotal.
“We found that veterans with epilepsy who enrolled in an online patient community reported statistically significant improvements in previously validated self-efficacy and self-management measures,” said the authors of the study, which was funded by a research grant from the pharmaceutical company UCB Inc. and managed through the Northern California Institute for Research and Education in San Francisco.
The study's lead author, John D. Hixson, MD, an associate professor of neurology at the University of California, San Francisco, and deputy associate chief of staff for clinical informatics at the San Francisco VA Medical Center, said the next step for research is to determine if virtual patient communities lead to better clinical outcomes for epilepsy patients, including more efficient use of health care resources or even reductions in seizure frequency.
The diary information that a site like PatientsLikeMe collects from patients — reflecting their daily moods, medication side effects, stress levels, and seizure frequency — could give clinicians a better sense of how to manage their patients. “Currently, we are getting a snapshot of a patient at a moment in time and are not seeing the whole picture,” said Dr. Hixson. “The information we now use to make decisions for patients is, quite frankly, inadequate.”
Dr. Hixson said that staff at PatientsLikeMe had asked him to conduct a study using objective measures to evaluate the benefit of the site for epilepsy patients. PatientsLikeMe offers specialized portals for a wide range of medical conditions, including epilepsy; more than 10,500 people with epilepsy are enrolled as members.
Thirty-two percent of the 249 veterans enrolled in the study from VA centers in western states, Texas, Virginia, and North Carolina completed the survey. Most participants (80 percent) were men, with an average age of 50.2 years. Three-quarters of them were white and about two-thirds of them were not working for pay or were receiving disability income.
To evaluate the effectiveness of participation in the online program, the researchers conducted pre-intervention and post-intervention assessments of the participants using two validated measures: the Epilepsy Self-Efficacy Scale (ESES), a 33-item questionnaire with scores ranging from 0 to 300 that measures patients' confidence in managing their own care related to their epilepsy diagnosis, and the Epilepsy Self-Management Scale (ESMS), a 38-item scale that assesses the frequency of patients' self-management behaviors and includes five subscales (medication, information, safety, seizure, and lifestyle), with possible scores ranging from 38 to 190.
Among the findings, the average total ESMS score increased from 139.8 before the start of the online intervention to 142.7 after six weeks (p=0.02), and the average total ESES score increased from 244.2 to 254.4 (p=0.02). The improvements, while clinically modest, were statistically significant, the researchers reported, and the findings held up when multiple statistical methods were used for analysis.
The higher magnitude of improvement (and greater statistical significance) was seen in the category of information management, which “includes the use of a seizure diary, tracking side effects, and tools for medication adherence,” the researchers wrote. The greatest ESES improvement was in the category of general self-efficacy.
The researchers also collected data on how often the veterans logged on to PatientsLikeMe and whether they posted anything on the visible patient forum. The median number of log-ons for those who completed the study was five, and 15.2 percent of that group posted a comment on the forum. Nearly half of those who completed the study reported in a satisfaction survey that they “agreed or strongly agreed that PLM [PatientsLikeMe] gave them more or better control over their condition and helped them understand their seizures.”
The study had limitations, including the fact that only 37 percent of enrollees completed the second round of ESES and ESMS surveys, though that is consistent with other Internet-based research studies, Dr. Hixson said. He noted, as well, that the study length — six weeks — was relatively short.
“The time period may have been too brief to accurately gauge long-term changes in self-management behaviors,” the researchers said.
Dr. Hixson told Neurology Today that one worry about online patient forums has been the possibility that patients might exchange incorrect or misleading information about diagnoses and treatments. “We really did not see any of that,” he said.
Since the study did not compare the online patient site with a traditional support group, Dr. Hixson said it was impossible to say whether one was better than the other. The online approach, however, does offer more flexibility and convenience, particularly for patients who do not live near a medical center.
He added that online patient sites could be particularly helpful for veterans, who often live in rural areas and have to travel a good distance for their health care. “Online support groups are immediately accessible if you have a computer and Internet access.”
Dr. Hixson said that future studies should assess whether the benefits reported in his team's study — improvements in information management, for instance — translate into better seizure control or more efficient use of health care resources. While his team's study did not find any significant effect from the social support provided by the PatientsLikeMe site, the study design was not powered to directly address that question.
“The utilization data for the study population suggest that the social element of the platform was a strong motivator for participation,” he said, adding that future research needs to directly explore the potential social benefits of being connected to an online patient community.
Another looming question is whether clinicians can incorporate the day-to-day information that patients keep track of using online tools into the decisions they make when the patient is in their office. Collecting lots of data is one thing, but it is only useful if it can be easily interpreted, Dr. Hixson said.
The study is important for a few reasons, said Daniel Hoch, MD, PhD, FAAN, an epileptologist and assistant professor of neurology at Massachusetts General Hospital. Dr. Hoch, who founded braintalk.org, a collection of over 200 online support groups for people with neurologic disease, said it is not easy to engage patients in an online community and the fact that that in this study they were able to get reasonably good engagement is important.
“In past studies, giving patients access to a community and engaging with others has not been a high priority,” Dr. Hoch said. “This study shows that either attention to this aspect of health care and taking control of one's health has undergone broad acceptance, or the way this resource was presented in this study was particularly well done (or both). Either way, It's heartening to see acceptance and use of something like PatientsLikeMe in a defined clinical setting.”
That said, he noted that the improvements in self-efficacy and management were indeed modest. “I think they are meaningful, though, since this is such a hard nut to crack. Getting patients to change behavior is amazingly difficult. This work is encouraging.”
Sheryl Haut, MD, a professor of clinical neurology at Albert Einstein College of Medicine and director of adult epilepsy at Montefiore Medical Center in the Bronx, NY, said the finding that epilepsy patients might gain some mastery over their condition using an online support program provides a “welcome change to the feeling of a lack of control that many of our patients experience.”
Dr. Haut, who was not involved with the study, agreed that “there is the potential for learning a lot more about the landscape in which the patient functions” using real-time data collected through online patient sites, as well as from smartphone health apps and mobile monitoring and testing devices. “We have to figure out how to break all that information down into a usable form of data for the clinician.”
Dr. Haut said she is “enthused and excited that the field of epilepsy care is going more in the direction of patient-centered approaches. For so many years our focus had been on stopping seizures and stopping medication side effects, but there is a growing awareness that patients' attitudes and self-management may have a huge impact on their overall health and well-being.”