Readability and content gaps in online epilepsy surgery materials as potential health literacy and shared‐decision‐making barriers

Abstract

Objective

Epilepsy surgery is an effective albeit underused treatment for refractory epilepsy, and online materials are vital to patient understanding of the complex process. Our goal is to analyze the readability and content inclusion of online patient health education materials designed for epilepsy surgery.

Methods

A private browser setting was used on Google and Bing to identify the top 100 search results for the terms “epilepsy+surgery”. Scientific papers, insurance pages, pay‐wall access sites, and non‐text content were excluded. The website text was reformatted to exclude graphics, contact information, links, and headers. Readability metrics were calculated using an online tool. Text content was analyzed for inclusion of important concepts (pre‐surgical evaluation, complications, risks of continued seizures, types of surgery, complimentary diagrams/audiovisual material). Comparison of readability and content inclusion was performed as a function of organization types (epilepsy center, community health organization, pediatric‐specific) and location (region, country).

Results

Browser search yielded 82 distinct websites with information regarding epilepsy surgery, with 98.7% of websites exceeding the recommended 6th‐grade reading level for health information. Epilepsy centers had significantly worse readability (Flesch–Kincaid Grade Level (FKGL) P < 0.01 and Flesch Reading Ease (FRE) P < 0.05). Content analysis showed that only 37% of websites discuss surgical side effects and only 23% mention the risks of continued seizures. Epilepsy centers were less likely to report information on surgical side effects (P < 0.001). UK‐based websites had better readability (FKGL P < 0.01 and FRE P < 0.01) and were more likely to discuss side effects (P = 0.01) compared to US‐based websites.

Significance

The majority of online health content is overly complex and relatively incomplete in multiple key areas important to health literacy and understanding of surgical candidacy. Our findings suggest academic organizations, including level 4 epilepsy centers, need to simplify and broaden online education resources. More comprehensive, publicly accessible, and readable information may lead to better‐shared decision‐making.

Key points.

• The readability level of online epilepsy surgery materials fails to meet the recommended standard of 6th grade (11‐12 years old), with a median readability level around 12th grade (17‐18 years old).

• Though 82% of websites included information on pre‐surgical workup, only 37% included surgical side effects and 23% included risks of continued seizures.

• Non‐epilepsy centers and community health sites were more readable and had more comprehensive information than their academic counterparts.

• We suggest that academic institutions collaborate with epilepsy community health organizations to improve their website readability and content inclusion.

1. INTRODUCTION

The internet has become an increasingly utilized public resource for health information. However, the average reading level of publicly available online medical information is far above the recommended reading level for health materials. ¹ In the United States (US), the average adult reads at a 7th‐ or 8th‐grade reading level (12‐13 years old). ² , ³ However, data from other sources, such as Medicaid enrollees, suggests that the mean reading level in some important health consumers is at or below the sixth‐grade level. ⁴ In the United Kingdom (UK), the average adult has a reading age equivalent to that of a 9‐year‐old (estimated at US equivalent 4th‐grade level). ⁵

The US Department of Health and Human Services and the American Medical Association recommend a reading level below a sixth‐grade level for health information. ⁶ Similarly, Health Education England suggestions are differentiated by the complexity of content, with simple health information recommended at a 9‐year‐old level while complex health information materials should be understood by at least an 11‐year‐old (estimated at US equivalent 6th‐grade level). ⁷

Given that people with neurological conditions including epilepsy may have additional cognitive deficits, this further emphasizes the need for more broadly accessible content at a lower reading level. For example, people with temporal lobe epilepsy may have difficulty interpreting nouns and verbs. ⁸ Furthermore, childhood‐onset epilepsy has long been associated with lower levels of educational attainment and increased risk of learning problems. ⁹ , ¹⁰ One study measured educational achievement based on reading ability and found an increased risk of educational delay in children with refractory epilepsy. ¹¹ People living with refractory epilepsy who also have associated cognitive comorbidities may have greater difficulty than the average population with written health education materials. Thus, greater attention should be directed toward creating health information accessible to patients with medication‐resistant epilepsy.

Epilepsy surgery is an effective, albeit underused, treatment for medically refractory epilepsy. There is no single surgical approach, and there are a variety of complex procedures that can be used. This further emphasizes the importance of patients fully understanding the variety of options, the evaluation and decision‐making processes, and potential side effects. It can be difficult for patients to fully remember and comprehend the large amount of information given during a single visit with their provider. ¹² Therefore, complimentary online learning materials are potentially a very important resource for the patient considering epilepsy surgery.

A prior UK study analyzed the readability of websites pertaining to epilepsy surgery and showed reading levels well above the adult average reading aptitude. ⁵ However, their study did not evaluate how website characteristics and origins affected the readability. The paper briefly discussed the inclusion of important content and suggested content analysis as important in future studies. With our current study, we utilized a similar approach with a US‐based online search, while also reviewing the inclusion of key topics needed for improved health literacy about epilepsy surgery. As with the UK study, we expected that overall, the average readability of online epilepsy surgery informational materials would exceed the recommended standard. Furthermore, we hypothesized that community health organizations would provide educational materials with significantly better readability than other online sources. Our approach also identified sources and specific topics with readability levels that could be reviewed as models for epilepsy surgery health literacy.

2. METHODS

2.1. Search methods

The most commonly used public internet search engines worldwide (Google and Bing) were used to find the top 100 results for the terms “epilepsy+surgery”. ¹³ We used a single laptop and browser (Google Chrome) in private mode so that our search would not be affected by browsing history, cookies, location or site data. In the results, links to different web pages within the same organization were counted as separate links by search rank. Duplicate links between the Google and Bing searches were noted and removed.

We excluded advertisements, news articles unrelated to epilepsy surgery, pay‐wall restricted content, insurance websites, scientific articles or professional content catering to healthcare professionals, and any sites with only audiovisual materials but no accompanying text (eg, YouTube videos).

To determine which text on the website would be included, we elected to follow the first branching links a community member would see in reviewing a website's content to gather further information. For each website, we included information related to epilepsy surgery that was within 2 sequential clicks of the landing page (where the link from the Google/Bing search would bring the user) within the website. For example, a search result may include a tab to a different page within the organization's website addressing epilepsy surgery, which subsequently leads to another page with our predefined epilepsy surgery content topics. In this case, text from both pages would be included in the readability and content analysis for that search result. We elected not to study the landing page solely, as studies suggest that consumers use websites to answer a specific question rather than browse, so their chances of clicking on to an internal page to pursue an interest are likely. ¹⁴

We categorized each website by organization type, epilepsy center level, country of origin, state (if based in the US), and patient age group (adult, pediatric, or both). The website's date of last revision was also recorded if provided.

• Organization type: Labeled as a community health organization or a hospital‐based health center. In the case that a community health organization is linked to a hospital system, we still categorize it as a community health organization if it had both community‐centered leadership and a vision or mission dedicated to improving quality of life, health understanding, and advocacy for the community.

• Epilepsy centers: Sites linked to an epilepsy center were further categorized as to whether they served adult or pediatric patients, or both. We also included their designation as a level 4 epilepsy center, level 3, or neither, as per National Association Epilepsy Centers (NAEC) accreditation.

• Location: Sources were divided into US‐based or non‐US‐based organizations. All non‐US‐based sites were found from organizations based in the UK and were reclassified as such. US‐based organizations were further categorized by state and then region as per census coding and NAEC regional categories.

2.2. Text reformatting for readability analysis

In preparation for readability analysis, identified online health information text was reformatted following the guidelines of a prior to analysis to ensure accurate scoring of content and to avoid overcounting of sentences. ¹⁵ Within the website's text, we removed: (1) headers, (2) graphics, (3) advertisements, (4) contact information, and (5) links. Additionally, bulleted text was reformatted to fit the structure of complete sentences. Punctuation was reviewed, including the removal of periods in the text that were not used as sentence punctuation.

2.3. Readability analysis

Readability metrics were calculated with an online readability tool (Datayze Readability Analyzer). This tool computes the number of sentences, words per sentence, characters per word, and percentage of difficult words for each entry. The tool also derives several readability scores, including the Flesch–Kincaid Grade Level (FKGL) and Flesch Reading Ease (FRE), which are well‐validated measures used to compare text reading difficulty and complexity: FKGL approximates the US grade level required to comprehend the text, and FRE measures readability of text on a range from 0 to 100, with higher scores corresponding to material that is easier to read. ¹⁶ , ¹⁷ For example, content written for broad readability and literacy at a 6th‐grade level and considered as easy to read would correspond to a FRE score of 80‐90, and content written at an 8‐9th grade reading level considered “plain English” corresponds to a FRE score of 60‐70. ¹⁶ , ¹⁷

Statistical analysis was done with RStudio (“Spotted Wakerobin” release for Intel Mac OS) using the Kruskal‐Wallis test, and statistical assumptions were assessed. Readability metrics were analyzed based on grouping by organization type, epilepsy center level, country of origin, regional division within the US, and patient age group (adult, pediatric, or both).

2.4. Content inclusion

Text content was reviewed for inclusion of important concepts that impact health literacy and consent including the pre‐surgical evaluation process, complications, risks of continuing to live with seizures, various types of surgery, pediatric‐specific content, and complimentary diagrams/audiovisual material. Initially, we sought to include content regarding the efficacy of surgical procedures, but this was so infrequently mentioned in online content that this category was excluded.

Initial text review and categorization for content addressing each topic was completed by two researchers (NS and SH). Any discrepancies were discussed and adjudicated between the two research team members (NS and SH) and senior author (DC). The review of content inclusion was limited to the text obtained within two links from the landing page from the search results.

Comparison of content inclusion was performed as a function of organization types (comprehensive epilepsy center furthered sub‐divided by NAEC‐listed level 3 and level 4, community health organization, institutions providing pediatric and/or adult services) and location (US‐ or UK‐based) using the chi‐square test through RStudio. ¹⁸

3. RESULTS

3.1. Website characteristics

Eighty‐two websites were included in our final analysis, with 76 results from our initial Google search and 6 more results from our Bing search once duplicate links had been removed. Of the included websites, 13 were from community health organizations, 66 were from epilepsy centers, 5 were of UK origin, 9 were exclusively written for pediatric age groups, and 14 were exclusively written for adults (Table 1).

TABLE 1.

Readability measures and sentence structure descriptors of websites by website background.

Organization type	Websites (n)	Flesch–Kincaid grade level b	Flesch Reading ease score b	Number of sentences b	Words per sentence b	Characters per word b	Percentage difficult words b
Overall	82	12.30 (10.87, 13.91)	37.35 (26.80, 14.53)	50 (28.25, 71.00)	16.56 (14.48, 5.13)	5.27 (5.13, 5.54)	23.31 (21.16, 27.05)
Community health
Yes	13	11.0 (9.23, 13.2)	41.8 (30.9, 53.9)	71 (53, 120.00) **	15.1 (14.0, 16.8)	5.14 (4.94, 5.43)	22.7 (18.4, 27.8)
No	69	12.3 (11.0, 14.4)	37.0 (24.7, 43.5)	42 (26.00, 62.00)	16.8 (14.6, 18.6)	5.33 (5.15, 5.55)	23.4 (21.2, 26.9)
Epilepsy center a
Yes	66	12.3 (11.1, 14.6) **	36.4 (24.3, 42.6) *	40.5 (25.2, 60.8)	16.9 (15.0, 18.6)	5.34 (5.15, 5.57) **	23.7 (21.5, 27.0) *
No	16	10.7 (9.49, 12.7)	43.9 (33.7, 53.1)	72.5 (57.5, 121.00) ***	15.0 (13.7, 16.5)	5.14 (4.93, 5.29)	21.9 (18.6, 25.6)
Country of origin
US	77	12.3 (11.0, 14.2) **	36.4 (25.3, 43.5) **	23.6 (21.3, 27.2) *	16.7 (14.5, 18.6)	5.33 (5.14, 5.58) **	23.6 (23.3, 27.2) *
UK	5	10.4 (8.77, 10.4)	53.9 (50.2, 57.2)	18.3 (18.2, 18.4)	15.1 (14.0, 16.6)	4.75 (4.75, 4.95)	18.3 (18.2, 18.4)
Patient population
Adult	9	12.5 (12.3, 13.2)	36.4 (31.7, 39.1)	38 (29, 60)	17.4 (16.8, 18.6)	5.33 (5.2, 5.37)	23.7 (22.6, 25.4)
Pediatric	14	11.9 (11.0, 14.2)	37.7 (26.7, 45.6)	47 (26.8, 59)	16.9 (15.3, 18.1)	5.33 (5.16, 5.5)	22.8 (21.3, 26.7)
Both	42	12.3 (11.1, 15.0)	36.0 (19.4, 43.1)	39.5 (25.2, 62.8)	16.7 (14.7, 18.7)	5.36 (5.15, 5.69)	23.6 (21.3, 27.9)
Regional (per NAEC Divisions)
Northeast	26	12.3 (11.1, 14.6)	36.8 (29.2, 43.4)	52.5 (29.5, 61.8)	17.0 (15.1, 18.8)	5.26 (5.15, 5.49)	22.7 (21.1, 25.0)
Northwest	12	11.9 (10.8, 13.3)	39.9 (29.4, 45.2)	34.5 (26.2, 51)	17.3 (15.0, 18.2)	5.4 (5.11, 5.58)	22.8 (21.7, 26.1)
Southeast	10	14.8 (13.4, 15.9)	21.9 (15.2, 31.2) *	27.5 (16.2, 34.2)	18.3 (16.4, 19.6)	5.55 (5.36, 5.94)	26.5 (24.2, 29.6) *
Southwest	16	11.4 (11.0, 13.3)	38.3 (30.1, 43.7)	56 (28, 79)	15.8 (13.2, 17.5)	5.22 (5.14, 5.48)	23.2 (21.5, 26.0)

Abbreviations: n, sample size; NAEC, National Association of Epilepsy Centers; UK, United Kingdom; US: United States.

^a Epilepsy centers including both US and non‐US.

^b Median (25th %ile, 75th %ile).

^* P < 0.05, Kruskal‐Wallis, comparison groups in bold ;

^** P < 0.01, Kruskal‐Wallis, comparison groups in bold ;

^*** P < 0.001, Kruskal‐Wallis, comparison groups in bold .

3.2. Readability

Overall, the median (IQR) number of sentences for all analyzed websites was 50 (28.25, 71.00); words per sentence, 16.56 (14.48, 5.13); characters per word, 5.27 (5.13, 5.54); and percentage difficult words, 23.31 (21.16, 27.05). The median readability scores (IQR) were FKGL, 12.30 (10.87, 13.91), and FRE, 37.35 (26.80, 14.53) These sentences seem to be cut off, or missing the word “were” or “are”. Only one website (WebMD), representing 1.21% of our total analysis, had a readability below the eighth‐grade level (7.85 FKGL) (Table 1).

When assessing for differences by website characteristics, it was found that epilepsy centers had fewer sentences (P = 0.002), but significantly more difficult readability scores by FKGL (P < 0.001) and FRE (P = 0.004), as well as higher percentage of difficult words (P = 0.048) and characters per word (P = 0.006) (Table 1). Community health centers had a higher sentence count (P = 0.008), but only trended toward greater readability [11.0 (9.23, 13.2) FKGL, P = 0.07; 41.8 (30.9, 53.9) FRE, P = 0.09] (Table 1).

Analysis by location revealed that websites of a UK origin had greater readability in FKGL (P = 0.006) and FRE (P = 0.004), as well as lower characters per word (P = 0.003) and percentage of difficult words (P = 0.02). However, they contained a greater number of sentences (P = 0.02) (Table 1). The NAEC regional analysis revealed that the material from centers in the Southeast region had significantly lower readability in FRE (P = 0.05).

It should be noted that there were some anomalies that may have influenced the results. Firstly, the organization Epilepsy Foundation had three links included in the analysis. These websites were characterized as community health and non‐epilepsy centers. Since there were few community health sources, Epilepsy Foundation had increased representation in this small group. In a similar fashion, the organization Epilepsy Society had two links in the analysis, which were both categorized as community health, non‐epilepsy centers from the UK.

The comparison revealed no significant differences in the readability of the websites of pediatric and adult centers and the centers that provide care to both age groups, though the pediatric centers trended toward having higher readability than the other groups [11.9 (11.0, 14.2) FKGL, P = 0.80; 37.7 (26.7, 45.6) FRE, P = 0.69].

3.3. Content

Analysis of website content revealed that 82% of websites mentioned pre‐surgical workup, while only 37% discussed surgical side effects and only 23% mentioned the risks of continued seizures. Of the discussed procedures and surgical options, only radioablation was included in less than 50% of sources, with only 6% mentioning this procedure. Furthermore, only 32% of sites included audiovisual material as a complement to their reading materials (Table 2).

TABLE 2.

Content inclusion of epilepsy surgery websites by website background.

Organization type	Websites (n)	Intracranial monitoring (n, %)	RNS (n, %)	VNS (n, %)	Laser ablation (n, %)	Radio‐ ablation (n, %)	Audiovisual material/ diagrams (n, %)	Pre‐surgical workup (n, %)	Side effects of surgery (n, %)	Risks of continuing to have seizures (n, %)	Pediatric patients (n, %)
Overall	82	45 (55)	44 (54)	57 (70)	43 (52)	5 (6)	26 (32)	67 (82)	30 (37)	19 (23)	39 (48)
Community health
Yes	13	9 (69)	5 (38)	9 (69)	6 (46)	3 (23) *	7 (54)	11 (85)	12 (92) ***	6 (46)	11 (85) **
No	69	36 (52)	39 (57)	48 (70)	37 (54)	2 (3)	19 (28)	56 (81)	18 (26)	13 (19)	28 (41)
Epilepsy center a
Yes	66	33 (50)	38 (58)	46 (70)	37 (56)	2 (3)	18 (27)	53 (80)	17 (26)	13 (20)	28 (42)
No	16	12 (75)	6 (38)	11 (69)	6 (38)	3 (19)	8 (50)	14 (88)	13 (81) ***	6 (38)	11 (69)
Country of origin
US	77	43 (56)	44 (57) *	53 (69)	43 (56) *	5 (6)	24 (31)	62 (81)	25 (32)	16 (21)	35 (45)
UK	5	2 (40)	0 (0)	4 (80)	0 (0)	0 (0)	2 (40)	5 (100)	5 (100) *	3 (60)	4 (80)
Patient population
Adult	9	5 (56)	5 (56)	8 (89)	5 (56)	0 (0)	3 (33)	6 (67)	2 (22)	1 (11)	2 (22)
Pediatric	14	10 (67)	7 (47)	13 (87)	10 (67)	1 (7)	6 (40)	12 (80)	7 (47)	3 (20)	14 (93) ***
Both	42	19 (44)	26 (60)	26 (60)	22 (51)	1 (2)	10 (23)	36 (84)	9 (21)	9 (21)	12 (28)
Regional, per NAEC divisions
Northeast	26	23 (70)	17 (52)	25 (76)	12 (36)	3 (9)	8 (24)	28 (85)	13 (39)	8 (24)	17 (52)
Northwest	12	5 (38)	8 (62)	6 (46)	9 (69)	0 (0)	8 (62)	11 (85)	1 (8)	3 (23)	3 (23)
Southeast	10	3 (30)	4 (40)	6 (60)	5 (50)	0 (0)	2 (20)	7 (70)	0 (0)	1 (10)	4 (40)
Southwest	16	12 (60)	14 (70)	15 (75)	17 (85) **	2 (10)	6 (30)	16 (80)	10 (50)**	4 (20)	10 (50)

Note: Frequency of websites including content related to __________________.

Abbreviations: n, sample size; NAEC, National Association of Epilepsy Centers; RNS, responsive neurostimulation; UK, United Kingdom; US, United States; VNS, vagal nerve stimulation.

^a Epilepsy centers including both US non‐US.

^* P < 0.05, comparison groups in bold.

^** P < 0.01, comparison groups in bold.

^*** P < 0.001, comparison groups in bold.

Epilepsy centers were less likely to mention surgical side effects on their websites (p < 0.001) than sources from non‐epilepsy centers. The US sites were more likely to mention responsive neurostimulation (P = 0.04) and laser ablation (P = 0.05) but were less likely to discuss surgical side effects (P = 0.01) than UK sources. Community health sources were more likely to discuss pediatric‐specific information (P = 0.01), radioablation (P = 0.03), and surgical side effects (P < 0.001) compared to non‐community health sources including epilepsy centers.

3.4. Top 5 and bottom 5 readability scores

For a more descriptive look at individual websites as models for community health education, the sources with the top five and bottom five FKGL scores are displayed with their readability scores (Supplementary Table S1A,B). Among the top five most readable sources, four were community health centers aimed at educating the public on epilepsy surgery, and one was a UK‐based level 4 epilepsy center for pediatric patients. However, the website with the best readability by FKGL is WebMD (FKGL = 7.85, FRE = 59.44), a US‐based health information services website that publishes content on a variety of healthcare topics (website link available in Supplementary Table S1). It notably contains clearly labeled sections with common questions and answers and limited jargon, with a percent difficult word measure of only 15.5%.

Of the least readable websites, all five were epilepsy centers in the US and were notably all from the neurosurgery departments of their centers. Two sites from major academic medical centers had very little content, with sentence counts of only five and three, respectively (Supplementary Table S1B). A closer look at their websites revealed minimal information, a list of offered procedures with limited explanation, and no links for patients to follow for further information. A content comparison of some of the most readable excerpts identified in our review is available in Supplementary Table S2.

4. DISCUSSION

Our study analyzed online epilepsy surgery health information materials to determine overall readability and reviewed the text for inclusion of key content topics. Our study revealed that online health information about epilepsy surgery has overall poor readability, with the median readability level higher than that of a high school senior and several grade levels above the US and UK averages. This was consistent with the previous readability study performed in the UK. ⁵ The purpose of online health information is to increase health literacy for the general public and people living with specific conditions, and in their current state, epilepsy surgery‐related materials are not meeting this goal.

Epilepsy centers had significantly lower readability scores than non‐epilepsy centers. Although one may think they would be more likely to include a discussion of different surgical procedures, the only difference in our content analysis showed they were actually less likely to include information on surgical side effects. Epilepsy centers made up the majority of included sources and were often listed earlier in search results for both search engines—it is likely that patients will recognize a local academic name and click onto their website for reliable information. Therefore, it is important to prioritize the readability of academic and comprehensive epilepsy centers websites.

Previous studies of neurology‐oriented online health information showed similar findings, with readability far more above the American Medical Association, National Institutes of Health, and the United States Department of Health and Human Services‐recommended 6th grade reading level. ⁶ , ¹⁹ , ²⁰ In general, readability of online medical information is more difficult than recommended levels. ¹ , ⁶

Several other studies of health information readability noted the limitation that their analysis did not include a review of key content related to the condition, which we included in our analysis. ¹⁹ , ²¹ , ²² Our content analysis revealed that the major topics used for counseling a patient and family when considering whether to undergo epilepsy surgery are seldom mentioned on informational websites. Surgical side effects are a key point that people may consider when undergoing epilepsy surgery evaluation, and they were only present in 37% of websites. Low inclusion rates for surgical side effect content among epilepsy centers could reflect the centers' direct experience working with patients who are undergoing epilepsy surgery and experience with surgical counseling. Another important factor for an individual to consider when undergoing surgical evaluation is the risk of continuing to have seizures. Though cranial surgery can be daunting, the risks of continued seizures are significant. ²³ , ²⁴ Patients with epilepsy and families may already be familiar with their own limitations, but it is important to remind them why the surgery is considered so successful.

Pre‐surgical workup was included in 82% of websites, which is higher than any other content inclusion category. Part of the complexity of epilepsy surgery is attributed to the complex pre‐surgical evaluation, which involves extended inpatient hospital stays and in the case of intracranial monitoring, a preliminary neurosurgical procedure. The relatively high inclusion indicates that sites are aware that patients are looking to learn more about the process of surgical evaluation.

It is important to note that readability measures did not consider the usage of audiovisual materials (diagrams, videos, images) that could potentially provide an alternative route for understanding concepts related to epilepsy surgery. However, as only approximately a third of the analyzed websites included any form of non‐textual information, we are presented with a unique opportunity for improving overall patient understanding and information accessibility for the neuro‐diverse, by including audio content and descriptive text for any images for the visually impaired. Studies have shown that multimedia videos and graphic symbols significantly improved patient understanding of health information. ²⁵ Given the complex nature of the epilepsy surgery workup, we recommend infographics with a process flowchart and/or videos of clinicians explaining the components and order of the workup. As models for improved online epilepsy surgery health education are developed, pre‐ and post‐intervention knowledge assessments could help evaluate the influence of complementary audiovisual materials and the community's satisfaction with new materials.

Included in our analysis we also included a detailed review of the most and least readable websites (Supplementary Tables S1 and S2). In our review of the most readable websites revealed simple explanations optimizing the use of plain English. ¹⁶ , ²⁶ They tended to cover epilepsy surgery workup in a stepwise chronological fashion and clearly explained why someone may want to pursue epilepsy surgery. In fact, federally funded programs and health centers may fall under the Plain Writing Act of 2010, requiring them to provide easily readable information to the public. ²⁷ Two of the top five websites were from Epilepsy Action, a UK‐based website dedicated to providing support and education for people with epilepsy. The explanatory elements, simple phrasing, and key content inclusion from this website should be browsed and may be considered as a model by academic centers and other organizations.

Meanwhile, the lowest readability sites tended to have limited explanatory text and lists including complex medical jargon. For example, a major Southeastern academic center's neurosurgical site on epilepsy surgery does not have specific information regarding the steps involved for surgery, but simply goes through what services and procedures are available. The poor readability is likely due to several services being listed out with a limited explanation, which crowds the small amount of text with complicated wording. Separately, a Mid‐Atlantic major academic center's website is similar, with lists of services instead of explanation. One interesting example was from a Northeastern center's neurosurgical website, which contained little information on epilepsy surgery, and while that institution has a comprehensive epilepsy center there is no link available to this resource for patients who are visiting the neurosurgical website that appeared in the top 100 search results (Supplementary Table S1).

4.1. Limitations

Though readability is an important and reliable method of determining a text's accessibility, it is not without flaws. Readability analysis does not capture the linguistic flow and the impact of text formatting on the ease of reading. These methods are not an analysis of how well the text conveys the information or the health literacy of the reader after exposure. The readability measures that we utilized are also limited to the English language, and we did not include websites in other languages that may be frequented by patients. For the content analysis, the various topics were recorded as either included or not, the quality of the content or its agreement with epilepsy surgery guidelines was not assessed. Furthermore, this study compared all websites in the top 82 results to one another on the same footing ‐ there was no increased importance to the websites in the first few results. Lastly, there were excluded websites that could have been used by patients for information. For example, a patient may have clicked a scientific article and read the rate of side effects from the abstract, even if it was not meant for patient consumption.

5. CONCLUSION

Epilepsy surgery is an effective treatment for medically refractory epilepsy, but its low usage has triggered an investigation into the many barriers encountered by patients living with epilepsy. Our study shows that along with other sociodemographic and systemic barriers, patients may face health literacy barriers due to poor readability of the commonly available epilepsy surgery websites on public search engines. Beyond difficult readability, these websites also do not consistently cover topics essential to health literacy about epilepsy surgery, including side effects or perioperative complications and the risks posed by continued seizures if they do not pursue epilepsy surgery evaluation or interventions offered. We found that community health websites have statistically better readability and content coverage.

Based on our findings, we encourage academic centers, whose websites may be more frequented by patients, to invite collaboration with community health organizations to contribute to their epilepsy center website design in a public engagement effort to ensure the community's information needs are addressed. To start, epilepsy care centers and providers could engage with epilepsy community organizations to include links to their websites and resources to improve access to the most readable content available online. As online materials undergo improvement, they should include summary data on the potential efficacy of surgical interventions for epilepsy, specific surgical modalities, and surgical morbidity and mortality. We strongly feel that improving the clarity and availability of this information can help direct a nuanced discussion with individuals and families on how they manage their epilepsy and consider surgical offerings based on each individual's factors. Improving online health materials and website designs are essential first steps to achieve better epilepsy health literacy and access to care for the communities we serve.

AUTHOR CONTRIBUTIONS

Namal U. Seneviratne and Sophey Y. Ho conducted the internet searches, text reformatting, and data analysis. They contributed to the writing of the manuscript. Alexis Boro contributed to the writing of the manuscript. Daniel J. Correa served as the primary mentor and contributed to the writing of the manuscript.

CONFLICT OF INTEREST STATEMENT

Author D.J.C. has received personal compensation in the range of $0‐$499 for serving as a Consultant for Independent Medical Consultants, personal compensation in the range of $0‐$499 for serving as a Consultant for Atheneum Partners, and personal compensation in the range of $10 000‐$49 999 for serving as an Editor, Associate Editor, or Editorial Advisory Board Member for American Academy of Neurology, and research support from Genentech, and research support from Psi Upsilon Foundation Inc., and has stock in Aidin Inc. The remaining authors have no conflicts of interest. We confirm that we have read the Journal's position on issues involved in ethical publication and affirm that this report is consistent with those guidelines.

Supporting information

Table S1.

Seneviratne NU, Ho SY, Boro A, Correa DJ. Readability and content gaps in online epilepsy surgery materials as potential health literacy and shared‐decision‐making barriers. Epilepsia Open. 2023;8:1566–1575. 10.1002/epi4.12842