We need to do better: Readability analysis of online patient information on cancer survivorship and fertility preservation

Alejos, David; Tregubenko, Polina; Jayarangaiah, Apoorva; Steinberg, Lewis; Kumar, Abhishek

doi:10.1016/j.jcpo.2021.100276

Cited by 7 publications

(9 citation statements)

References 13 publications

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“…More generally, public websites providing cancer-related information have been shown to be largely incomplete in the information they provide, with questions about decision-making being discussed the least [ 48 ]. Furthermore, web-based patient information about cancer survivorship and fertility preservation has been shown to be written, on average, at high school senior and junior college levels [ 49 ], thus failing to meet health literacy standards [ 50 ]. Results suggest that finding reliable, understandable, and trustworthy information about family building after cancer may be a difficult task for young adult female cancer survivors and this decision aid tool fills this critical unmet need.…”

Section: Discussionmentioning

confidence: 99%

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing

Benedict¹,

Dauber-Decker²,

Ford³

et al. 2022

JMIR Cancer

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Background Owing to gonadotoxic cancer treatments, young adult female survivors often report uncertainty about their fertility, reproductive potential, and family-building options after treatment. Roadmap to Parenthood is a web-based decision aid and planning tool for family building after cancer. Objective As part of a patient-centered development process, this study evaluated the usability of the decision aid website to inform design modifications and improve user experience. Methods In total, 2 rounds of usability testing were conducted with the target population of young adult female cancer survivors. During the testing sessions, participants viewed the website twice; first, as a think-aloud exercise, and second, while a researcher interrupted at key points to obtain user feedback. Quantitative and qualitative data were collected to assess website usability. Quantitative measures included the System Usability Scale, WebQual, and eHealth Impact Questionnaire. An exit interview with open-ended questions gathered feedback on likes and dislikes and suggestions for improvement. Results Participants (N=10) were young adult women, with average age of 30.9 (SD 4.51) years, and average time since treatment was 4.44 (SD 3.56) years. Website usability scores improved on the System Usability Scale from “acceptable” in round 1 to “excellent” in round 2 after making design changes based on user feedback (scores of 68 and 89.4, respectively). WebQual scores showed similar improvement from round 1 to round 2 of testing (mean 5.6 to 6.25; range 1-7). On the eHealth Impact Questionnaire, the information and presentation of the website was perceived as comprehensive, easy to understand, and trustworthy. Participants also reported improved confidence to discuss and manage fertility and family-building issues and felt encouraged to play a more active role in managing their fertility. In all, 3 usability themes were identified from the qualitative feedback: ease of use, visibility and navigation, and informational content and usefulness. Overall feedback was positive, and participants reported intentions to use the decision aid website in the future. In total, 10% (1/10) of the participants reported negative emotions when learning about infertility risks and potential family-building challenges. Conclusions Website usability improved after design changes were made in response to user feedback. Young adult female survivors reported positive views about the website and indicated that the decision aid would be useful in decision-making about family building after cancer. Future studies will include further design modifications to consider the emotional experiences of users and any additional navigational features or content to optimize the ease of use and support provided by the tool.

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Section: Discussionmentioning

confidence: 99%

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing

Benedict¹,

Dauber-Decker²,

Ford³

et al. 2022

JMIR Cancer

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“…Indeed, this challenge is not unique to the information on CBE nor that of urology, it is endemic to all fields of medicine. Countless studies have been published evaluating the readability of patient education materials online across multiple specialties, and the trend for information to be above the recommended reading level is overwhelming (14)(15)(16)(17)(18)(19)(20)(21)(22)(23)(24)(25)(26).…”

Section: Discussionmentioning

confidence: 99%

Complicating the already complex? Readability scores in bladder exstrophy and its treatment

et al. 2022

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PurposeClassic bladder exstrophy (CBE), is a complex congenital malformation affecting formation of the lower abdominal wall and bladder. This study evaluates the readability of common online resources regarding CBE and its treatment. We hypothesize that high levels of reading comprehension are reflected in these resources, which may not be suitable to the general population for understanding this condition.MethodsThe search terms “bladder exstrophy” and “bladder exstrophy treatment” were reviewed on the Google search engine. The first 100 search results for each search query were collected. The readability of each webpage was assessed using a combination of four independent validated formulae: the Gunning-Fog index (GFI), SMOG grade (Simple Measure of Gobbledygook), Dale-Chall index (DCI), and the Flesch-Kincaid grade (FKG).ResultsA total of 200 search results were examined using the two search queries, yielding 72 unique webpages that fit the inclusionary criteria. The mean readability scores across all websites were a GFI of 14.3, SMOG score of 10, DCI of 9.06, and a FKG of 11.6. These scores correlate to adjusted grade levels of college sophomore, 11th grade, college, and 11th grade respectively. There was no significant difference of readability between website categories across GFI (p = 0.32), SMOG (p = 0.38), DCI (p = 0.33), and FKG (p = 0.36).ConclusionThis study demonstrates that online health information regarding CBE and its treatment is written at least the 11th grade reading level or above. This highlights the necessity to simplify online resources pertaining to CBE.

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“…The Flesch Reading Ease (FRE) score was used to assess the readability of each unique website. FRE scores range from 0 to 100 and relate to a respective US educational level, with higher scores corresponding to easier reading material (see Table 1 for readability test formula and score interpretation) 27,28 . As the American Medical Association (AMA) recommends online resources for patients to be written at a sixth‐grade reading level or lower, websites with FRE scores greater than or equal to 80 are considered comprehensible for most of the general public 28,29 .…”

Section: Methodsmentioning

confidence: 99%

“…27,28 As the American Medical Association (AMA) recommends online resources for patients to be written at a sixth-grade reading level or lower, websites with FRE scores greater than or equal to 80 are considered comprehensible for most of the general public. 28,29 Readability scores were calculated using an online application (https://readable.com/).…”

Section: Readability Assessmentmentioning

confidence: 99%

Quality and readability assessment of online patient information on cytoreductive surgery and hyperthermic intraperitoneal chemotherapy

Rouhi

Ghanem

Hoeltzel

et al. 2022

Journal of Surgical Oncology

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Background and Objectives We aim to assess the quality and readability of online information available to patients considering cytoreductive surgery with hyperthermic intraperitoneal chemotherapy (CRS‐HIPEC). Methods The top three search engines (Google, Bing, and Yahoo) were searched in March 2022. Websites were classified as academic, hospital‐affiliated, foundation/advocacy, commercial, or unspecified. Quality of information was assessed using the JAMA benchmark criteria (0–4) and DISCERN tool (16–80), and the presence of a Health On the Net code (HONcode) seal. Readability was evaluated using the Flesch Reading Ease score. Results Fifty unique websites were included. The average JAMA and DISCERN scores of all websites were 0.72 ± 1.14 and 39.58 ± 13.71, respectively. Foundation/advocacy websites had significantly higher JAMA mean score than commercial (p = 0.044), academic (p < 0.001), and hospital‐affiliated websites (p = 0.001). Foundation/advocacy sites had a significantly higher DISCERN mean score than hospital‐affiliated (p = 0.035) and academic websites (p = 0.030). The HONcode seal was present in 4 (8%) websites analyzed. Readability was difficult and at the level of college students. Conclusions The overall quality of patient‐oriented online information on CRS‐HIPEC is poor and available resources may not be comprehensible to the general public. Patients seeking information on CRS‐HIPEC should be directed to sites affiliated with foundation/advocacy organizations.

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We need to do better: Readability analysis of online patient information on cancer survivorship and fertility preservation

Cited by 7 publications

References 13 publications

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing

Development of a Web-Based Decision Aid and Planning Tool for Family Building After Cancer (Roadmap to Parenthood): Usability Testing

Complicating the already complex? Readability scores in bladder exstrophy and its treatment

Quality and readability assessment of online patient information on cytoreductive surgery and hyperthermic intraperitoneal chemotherapy

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