A Mismatch Between Patient Education Materials About Sickle Cell Disease and the Literacy Level of Their Intended Audience

McClure, Elizabeth; Ng, Jared; Vitzthum, Kelly; Rudd, Rima E.

doi:10.5888/pcd13.150478

Cited by 38 publications

(45 citation statements)

References 15 publications

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“…However, we found very few elements of actionability. In this regard the most visible German websites on melanoma immunotherapy were in line with other patient education material that was previously assessed by the same tool [41,42]. However, the application of more elements of actionability and interactivity (e.g.…”

Section: Principal Results and Comparison With Prior Workmentioning

confidence: 71%

Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis

et al. 2018

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Section: Principal Results and Comparison With Prior Workmentioning

confidence: 71%

Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis

et al. 2018

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“…7,8 The Agency for Healthcare Research and Quality developed the Patient Education Materials Assessment Tool for assessment of the overall understandability and actionability of any audiovisual or written information for patients. 9,10 The quality of information provided on websites can be evaluated using two instruments: the global quality score 11 and the Health on the Net code instrument (www.hon.ch/HONcode/). [11][12][13] The ALEXA tool is used to investigate website popularity and visibility.…”

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confidence: 99%

The quality, understandability, readability, and popularity of online educational materials for heart murmur

et al. 2019

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Objective:Murmurs are abnormal audible heart sounds produced by turbulent blood flow. Therefore, murmurs in a child may be a source of anxiety for family members. Families often use online materials to explore possible reasons for these murmurs, given the accessibility of information on the Internet. In this study, we evaluated the quality, understandability, readability, and popularity of online materials about heart murmur.Methods:An Internet search was performed for “heart murmur” using the Google search engine. The global quality score (on a scale of 1 to 5, corresponding to poor to excellent quality) and Health on the Net code were used to measure the quality of information presented. The understandability of the web pages identified was measured using the Patient Education Materials Assessment Tool (score range from 0 to 100%, scores below 70% reflect poor performance). The readability of each web pages was assessed using four validated indices: the Flesch Reading Ease Score, the Flesch–Kincaid Grade Level, the Gunning Frequency of Gobbledygook, and the Simple Measure of Gobbledygook. The ALEXA traffic tool was used to reference domains’ popularity and visibility.Results:We identified 230 English-language patient educational materials that discussed heart murmur. After exclusion, a total of 86 web pages were evaluated for this study. The average global quality score was 4.34 (SD = 0.71; range from 3 to 5) indicating that the quality of information of most websites was good. Only 14 (16.3%) websites had Health on the Net certification. The mean understandability score for all Internet-based patient educational materials was 74.6% (SD = 12.8%; range from 31.2 to 93.7%). A score suggesting these Internet-based patient educational materials were “easy to understand”. The mean readability levels of all patient educational materials were higher than the recommended sixth-grade reading level, according to all indices applied. This means that the level of readability is difficult. The average grade level for all web pages was 10.4 ± 1.65 (range from 7.53 to 14.13). The Flesch–Kincaid Grade level was 10 ± 1.81, the Gunning Frequency of Gobbledygook level was 12.1 ± 1.85, and the Simple Measure of Gobbledygook level was 9.1 ± 1.38. The average Flesch Reading Ease Score was 55 ± 9.1 (range from 32.4 to 72.9).Conclusion:We demonstrated that web pages describing heart murmurs were understandable and high quality. However, the readability level of the websites was above the recommended sixth-grade reading level. Readability of written materials from online sources need to be improved. However, care must be taken to ensure that the information of web pages is of a high quality and understandable.

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“…The process started with the expertise of SCD providers across the country to curate the guidelines into the essential knowledge content that health care providers would use to care for individuals with SCD. As previous literature has demonstrated, educational material for SCD is often developed at too high of a reading level [ 72 ]. Therefore, our next step was to work with a health literacy expert team to make the language more accessible; however, when we approached the community with the adapted guidelines, the community could not extract meaningful content and did not yet find the guidelines useful.…”

Section: Discussionmentioning

confidence: 99%

Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers

et al. 2018

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BackgroundEvidence-based guidelines for sickle cell disease (SCD) health maintenance and management have been developed for primary health care providers, but not for individuals with SCD. To improve the quality of care delivered to individuals with SCD and their caregivers, the main purposes of this study were to: (1) understand the desire for patient-centered guidelines among the SCD community; and (2) adapt guideline material to be patient-centered using community-engagement strategies involving health care providers, community -based organizations, and individuals with the disease.MethodsFrom May–December 2016, a volunteer sample of 107 individuals with SCD and their caregivers gave feedback at community forums (n = 64) and community listening sessions (n = 43) about technology use for health information and desire for SCD-related guidelines. A team of community research partners consisting of community stakeholders, individuals living with SCD, and providers and researchers (experts) in SCD at nine institutions adapted guidelines to be patient-centered based on the following criteria: (1) understandable, (2) actionable, and (3) useful.ResultsIn community forums (n = 64), almost all participants (91%) wanted direct access to the content of the guidelines. Participants wanted guidelines in more than one format including paper (73%) and mobile devices (79%). Guidelines were adapted to be patient-centered. After multiple iterations of feedback, 100% of participants said the guidelines were understandable, most (88%) said they were actionable, and everyone (100%) would use these adapted guidelines to discuss their medical care with their health care providers.ConclusionsIndividuals with SCD and their caregivers want access to guidelines through multiple channels, including technology. Guidelines written for health care providers can be adapted to be patient-centered using Community-engaged research involving providers and patients. These patient-centered guidelines provide a framework for patients to discuss their medical care with their health care providers.Electronic supplementary materialThe online version of this article (10.1186/s12878-018-0106-3) contains supplementary material, which is available to authorized users.

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A Mismatch Between Patient Education Materials About Sickle Cell Disease and the Literacy Level of Their Intended Audience

Cited by 38 publications

References 15 publications

Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis

Exploring the Most Visible German Websites on Melanoma Immunotherapy: A Web-Based Analysis

The quality, understandability, readability, and popularity of online educational materials for heart murmur

Adapting medical guidelines to be patient-centered using a patient-driven process for individuals with sickle cell disease and their caregivers

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