Characteristics of patients with epilepsy who use a website providing healthcare information about epilepsy in South Korea

Koo, Yong Seo; Yang, Kyung-Sook; Seok, Hung Youl; Lee, Sang Kun; Lee, Il Keun; Cho, Yong Won; Lee, Joo Hwa; Kim, Ki Joong; Jung, Ki-Young

doi:10.1016/j.yebeh.2012.06.002

Cited by 12 publications

(9 citation statements)

References 50 publications

(51 reference statements)

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“…3,4 In chronic diseases such as epilepsy, information and counseling are essential for self-management, 5 which may enhance quality of life and possibly reduce disease-related morbidity and mortality. 6,7 According to DiIorio, people with epilepsy are faced with management issues in five broad areas: medication, coping with seizures, safety, information/support, and lifestyle issues. 8 However, clinicians in tertiary centers and epilepsy clinics have a limited capacity to provide sufficient information and counseling due to time constraints and other barriers, 9,10 leading patients to rely on other, possibly less reliable, information sources.…”

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confidence: 99%

Internet usage for health information by patients with epilepsy in China

Liu

Zhang

et al. 2013

Seizure

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confidence: 99%

Internet usage for health information by patients with epilepsy in China

Liu

Zhang

et al. 2013

Seizure

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“…studies where patients pointed out that personalization by navigating to the topics that interested them (e.g., news about their medications) or setting personal goals was important. 49,50 Furthermore, Koo et al point out that the users' satisfaction is critical to their motivation and continuous website usage. 49 In our study, several non-completers pointed out technical difficulties with accessing the app and a lack of reminders to access and use the app.…”

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confidence: 99%

A multicenter randomized controlled feasibility trial of a digital self‐management intervention for adults with epilepsy

Michaelis,

Knake,

Rosenow

et al. 2024

Epilepsia Open

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ObjectiveSelf‐management interventions may enhance health‐related quality of life (HRQoL) in epilepsy. However, several barriers often impair their implementation in the real world. Digital interventions may help to overcome some of these barriers. Considering this, the Helpilepsy Plus Prototype was developed as a prototype smartphone‐delivered self‐care treatment program for adults with epilepsy.MethodsThe 12‐week Helpilepsy Plus Prototype was evaluated through a randomized controlled feasibility trial with a waiting‐list control (WLC) group. Outcome measurement at baseline and at 12 weeks assessed adherence to the prototype intervention and changes in epilepsy‐related outcomes. The primary endpoint was patient autonomy measured with EASE, and secondary endpoints included HRQoL measured with QOLIE‐31, health literacy measured with HLQ, anxiety, and depression symptoms measured with HADS. Semi‐structured interviews were conducted with a heterogeneous sample of participants to assess user‐friendliness and usefulness. The prototype program was delivered through the Neuroventis Platform (Neuroventis, BV, Overijse, Belgium), a certified medical device (under EU/MDD Class I, and EU/MDR grace period).ResultsNinety‐two patients were included (46 in the intervention group, 46 in WLC). Most participants (63%, 58/92 women, median age 30 years) had pharmacoresistant epilepsy (61%, 56/92). Only 22% of participants (10/46) in the intervention group completed at least half of all intervention sessions. No significant differences between the intervention group and WLC were observed. Although there was a larger proportion of patients in the intervention group with meaningful improvements in HRQoL compared to WLC (19/46 versus 11/46), the difference was not significant (p = 0.119). Qualitative feedback showed that participants would appreciate more personalization, such as adaptation of the content to their current epilepsy knowledge level, a more interactive interface, shorter text sections, and interaction through reminders and notifications.SignificanceDigital interventions should allow sufficient scope for personalization and interaction to increase patient engagement and enable benefits from self‐care apps. Feedback loops allow the participatory development of tailored interventions.Plain Language SummaryIn this study, we investigated the effectiveness of an app‐based self‐help intervention. Study participants were either randomly assigned to a group that had access to the app or a group that received access to the app after the end of the study. Although a larger proportion of participants in the intervention group showed a relevant improvement in quality of life, the difference between the two groups was not statistically significant. Less than one‐fifth of participants in the intervention group attended at least half of all intervention sessions; patient feedback showed that patients required more personalization and interactive options.

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“…[ 11 ] Nowadays, the internet has become an important source of information on disease factors, self-management, and adjuvant therapies,[ 12 13 ] especially for patients with chronic conditions or those in poor health. [ 14 ] In developed countries, the internet has been an important channel through which patients have self-managed their conditions;[ 15 16 17 ] 57% of Americans[ 18 ] and 84.4% of Koreans[ 19 ] with epilepsy have used the internet to find information. Of the world's 50 million people with epilepsy, 85% live in developing countries.…”

Section: Introductionmentioning

confidence: 99%

“…[ 23 ] Additionally, the use of the internet might not be beneficial; one study demonstrated that epilepsy patients in an online group showed poorer general health, increased anxiety and depression, and a lower quality of life and satisfaction level than patients in an offline group. [ 19 ]…”

Section: Introductionmentioning

confidence: 99%

Chinese Internet Searches Provide Inaccurate and Misleading Information to Epilepsy Patients

Liu

Yong-sheng

et al. 2015

Chinese Medical Journal

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Background:Most patients with epilepsy want to learn as much as possible about the disease, and many have turned to the internet for information. Patients are likely to use information obtained from the internet to control their epilepsy, but little is known about the accuracy of this information. In this survey, we have assessed the feasibility and usability of internet-based interventions for the treatment of epilepsy.Methods:Data were collected from an internet search. Different search terms were used to obtain general information on epilepsy together with information about medication, types of epilepsy, treatment, women's health, and other information. The accuracy of the information was evaluated by a group of experts.Results:A total of 1320 web pages were assessed. The majority were websites related to health. A large number (80.2%) of web pages contained content related to the search term. A significant number of web pages 450/1058 (42.5%) claimed to provide information from a credible source; however, only 206/1058 (19.5%) of the information was accurate and complete; 326/1058 (30.8%) was accurate but incomplete; 328/1058 (31.0%) was correct but nonstandard, and 198/1058 (18.8%) was inaccurate. The authenticity of the information was not significantly different between the two search engines (χ2 = 0.009, P = 0.924). No significant difference was observed in the information obtained from a specialist or nonspecialist source (χ2 = 7.538, P = 0.057). There was also no correlation between the quality of the information and the priority (χ2 = 6.880, P = 0.076).Conclusions:Searching for information about epilepsy on the internet is convenient, but the information provided is not reliable. Too much information is inaccurate or for advertisement purposes, and it is difficult for patients to find the useful information. Turning to the internet for medical knowledge may be harmful. Physicians should be aware that their patients may search for information on the internet and guide them to safe, reputable websites.

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Characteristics of patients with epilepsy who use a website providing healthcare information about epilepsy in South Korea

Cited by 12 publications

References 50 publications

Internet usage for health information by patients with epilepsy in China

Internet usage for health information by patients with epilepsy in China

A multicenter randomized controlled feasibility trial of a digital self‐management intervention for adults with epilepsy

Chinese Internet Searches Provide Inaccurate and Misleading Information to Epilepsy Patients

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