What Epilepsy.com Users Are Saying: Results of Instapoll Surveys
In December 2007, results of past Instapolls on epilepsy.com were presented in a poster session at the American Epilepsy Society Meeting. The presentation, was called Website Surveys of Patient Concerns, Experiences, and Needs Using www.epilepsy.com.
Why is the Instapoll information important?
Understanding what people with epilepsy think, feel and believe is critical. There is no one therapy for treating seizures and epilepsy. Treatment, while based on science and experience, must be tailored to each person’s needs and goals, thus we need to know what people’s needs and goals are! How people feel about treatment, and how they implement therapies recommended by their doctors or other health care providers may be influenced by a number of factors such as personal experiences, perceptions, understanding of epilepsy, and their self-confidence, also called self-efficacy. We know that healthcare professionals may recommend specific self-management practices, or steps that people can take to help them manage their seizures. Unfortunately, we don’t really know how often these strategies are used.
What was the purpose of this project?
Since the Internet is now a major source of health information, epilepsy.com began polling users to better understand epilepsy from their perspective, and to determine the types of self-management practices being used. This polling technique also provided instant feedback about learning and site specific needs from users to the editorial team. For this project, the authors examined the data from this web-based survey tool on epilepsy.com to evaluate user concerns, experiences, and needs of people with epilepsy.
How was this project conducted?
The Instapolls used on epilepsy.com consisted of one question at a time with multiple choice answers developed by the Epilepsy Therapy Project team. Polls were rotated on a predetermined basis, beginning first on a weekly basis. Over time, polls were left up for 2 to 4 weeks to give a chance for more people to respond. Occasionally, important questions remained on the site for longer periods of time. Users chose to participate by clicking on their desired answer to the poll question at the time of their visit to the site. Responses were submitted instantly and tallied electronically. Users could view overall survey results immediately.
While the source of individual responses was recorded by user name, this information was only available to the website administrator. Confidentiality was maintained by using only group data.
What types of questions were used?
The authors looked at all the Instapoll questions and grouped questions into those that explored user characteristics, experiences, perceptions, and self-management practices or beliefs. Many users of epilepsy.com are family members of people with epilepsy, thus questions were designed to be answered by the person with epilepsy or their family/loved one.
Fifty polls were conducted between November 2005 and September 2007 with 47 used for analysis. Questions that generated fewer than 300 responses or that addressed site or time specific events were excluded, thus information pertaining to 25 questions was presented. The sample size for each question differed, with the number of respondents to poll questions ranging from 302 to 2,602.
What did the results show about respondents to the polls?
The 1st seizure occurred in childhood for 46% or adolescence for 22% of respondents. Epilepsy was diagnosed within 12 months of the 1st seizure for 65% of people, yet it took more than 2 years for 26% to be diagnosed. Many people reported having other health conditions along with their epilepsy or seizures. Migraines and headaches were the most frequently reported problem. Interestingly, 72% of people reported having one or more problems with migraines, headaches, mood, or sleep disorders. Only 36% of respondents were taking only one prescription medication to treat seizures and 59% were taking 2 to 5 different seizure medicines. Only 32% of people had heard about epilepsy and seizures before they were diagnosed.
What did people feel about their seizure control?
Perceptions of seizure control were examined by asking what statement best described their condition (Figure 1). The majority of respondents (66%) were still having seizures and only 17% achieved ‘no seizures and no side effects’. Despite having uncontrolled seizures, only 20% of respondents were seeing an epileptologist for treatment. (An epileptologist is a neurologist who specializes in treating people with seizures and epilepsy).
What did people feel about treatments for epilepsy?
Of the respondents, 46% felt that generic seizure medicines did not work as well as brand name seizure medicines, however, the other half felt that there was no difference between brand and generic forms. A few questions were posted to try and determine how people felt about different drug delivery systems. Respondents (59%) said they would prefer a nasal form of medicine to treat seizure clusters in an emergency as compared to a suppository or injection. Dietary therapies were of interest to many, with 51% believing that diet has a role in controlling seizures. Unfortunately, most respondents (59%) did not know enough about surgery to comment on how helpful it could be. Of the rest of respondents, only 25% of people felt that surgery could be helpful, 2% felt that it could get rid of seizures in everyone, 10% felt that it was too scary or dangerous, and 4% felt that it didn’t work.
Were people bothered by social issues and stigma?
More than 80% of respondents believe that misconceptions about epilepsy remain. For example, 41% felt that ‘tonic clonic seizures are the only seizure type’ while 41% felt that ‘people can swallow their tongue’ during a seizure. It is believed by 88% of respondents that it is harder for people with epilepsy to obtain health insurance in the United States. Disclosing information about seizures remains a major concern for many, particularly when to disclose epilepsy to a date.
What did this project tell us about a person’s confidence in managing their seizures?
The term self-management is used to describe what people do to manage their seizures. It’s more than just following the doctor’s orders. For example, self-management includes what a person (and their family) needs to do at home or outside of the hospital to manage seizures, prevent injuries, take treatments safely, or cope with the effects of seizures on daily life. Research has shown that a person’s self-confidence, or self-efficacy, affects how well a person manages chronic health problems such as epilepsy. Self-efficacy or a person’s confidence in their ability to manage seizures was fairly high in this sample; 48% were very confident in their abilities and only 19% felt not confident at all (Figure 2).
What self-management concerns and practices were examined?
People were asked about seizure triggers, or factors that could affect the likelihood of seizures. Stress was thought to be associated with seizures ‘frequently’ or ‘all of the time’ in 61% of respondents. Yet in a subsequent poll about seizure triggers, stress was noted by only 28% of this sample, followed by 25% with poor sleep, and 14% with missed medicine. The risk of injury from seizures is another common self-management concern. It was noted that 61% had been hospitalized due to an injury from seizures.
What strategies or plans did people use to help them manage their seizures?
Many people identified specific triggers to their seizures and 59% reported that they had a plan on how to modify their lifestyle to address these. However, even though injuries were a common concern, only 45% of people had a plan to prevent injuries. The most concerning finding was that of 2,602 respondents, only 19% of people had a plan for preventing or managing seizure emergencies. An overwhelming number of people did not know how to create these plans and had not talked to anyone about how to do this (Figure 3).
What do these findings mean?
These findings highlight a variety of concerns from visitors to epilepsy.com and demonstrate how technology can be used to elicit the ‘patient perspective’. Results of visitor characteristics show that visitors to epilepsy.com are getting diagnosed fairly promptly, but the problem of delayed diagnosis still remains. Outcomes of epilepsy care remain a major concern, with too few people achieving good results. These data are consistent with other studies that stress the seriousness of epilepsy as a major health problem.
Evaluating people’s perceptions of treatment raises interesting dilemmas. Too many people report uncontrolled seizures, but many don’t understand enough about treatment alternatives such as surgery to consider their options.
The self-management findings highlight a discrepancy between what people believe and what they do. Self-efficacy is generally considered one of the major factors in predicting successful self-management. In this sample, only a small number of respondents did not feel confident about managing their seizures. Modifiable triggers and injuries were common, however plans to address safety and seizure emergencies were not used by most people. Of interest is that participants were polled about the use of seizure emergency plans after epilepsy.com launched new content addressing this topic. The content may have stimulated the large number of responses to the question. Even so, the same pattern emerged with a surprising 66% reporting that they did not know how to create a seizure preparedness plan.
Who are the respondents?
Respondents to the Instapolls are a self-selected subset of people with epilepsy who are willing to be actively engaged. While limiting the ability to generalize findings, these results demonstrate that even people who are actively engaged and have access to information and technology have many problems related to their epilepsy. For example, respondents to the Instapolls still acknowledged trouble accessing specialists, having information about surgery, achieving good control of their epilepsy, managing social issues, and knowing how to take steps to improve safety and seizure control.
A potential limitation of these findings is that information about the respondents is not known, including what role they have in epilepsy care. The polls were placed on the website sections that provide information and support to the general public, including people with epilepsy, and questions were designed to be answered by the person with seizures or their loved ones. Nevertheless, any user could respond to these polls. Additionally, only one question was placed at a time, thus the sample differed for each question. The benefit of this approach is that people could respond to the questions of most interest to them, however, this approach could also lead to biased results.
What are the next steps?
We certainly want to continue using Instapolls on this site as a way to find out what people are thinking and what their needs are. We hope that results may serve as a learning tool for users, as they compare their own responses to those of others. These findings are also relevant to professionals who provide patient care, education, and counseling in any forum. The importance of teaching people the ‘how’ of living with epilepsy must be emphasized repeatedly, in many different ways.
This project was supported by the Epilepsy Therapy Project, a non-profit organization.
P. O. Shafer, RN (1,3), J.A. Cramer, BS (3,4), S. C. Schachter, MD (1,2,3), J. C. Gordon, PhD (3)
- Neurology Department, Beth Israel Deaconess Medical Center, Boston MA, USA
- Harvard Medical School, Boston MA, USA
- Epilepsy Therapy Project, Reston, VA, USA
- Department of Psychiatry, Yale University School of Medicine, West Haven, CT, USA
Edited by Steven C.Schachter, MD, February 2, 2008