Bilingualism, Deafness, and Literacy

Deaf students commonly leave high school with no higher than a fourth-grade reading level. This commonality may prompt certain assumptions regarding deaf children's strengths and weaknesses, particularly relating to reading development as well as broader academic and professional endeavors. The following review examines reading development among deaf, native sign language users as a bilingual process. Specifically, four common assumptions surrounding deaf learners' potential for ASL-English bilingual development are addressed including those relating to phonological accessibility, English-based signed system efficacy, ASL-English transference of language proficiency, and strategies for emergent literacy development in young, deaf learners. Finally, suggestions for future research endeavors are posed by the author.

An Evaluation Of The Quality Of Patient-Oriented Online Resources For Hemodialysis Access (Preprint)

BACKGROUND Patients and families increasingly turn to the internet for information and resources regarding their medical conditions. These searches are conducted in an independent and unsupervised manner, often without guidance from providers. Multiple reports in the medical oncology literature have cast significant doubt on the accuracy and currency of the data found on patient-focused websites OBJECTIVE To critically appraise the quality of patient-focused online resources concerning hemodialysis access procedures. METHODS A recently validated search strategy using the meta-search engines Google, Dogpile, and Yippy with the query “hemodialysis access” was performed on a cleared-cache web browser during January 2020. Inclusion criteria for the study were websites intended for patient education in English. Exclusions criteria consisted of online monographs, academic journals, and sites requiring paid subscription. Three independent reviewers evaluated the websites using a validated, structured rating tool that scored the Affiliation, Accountability, Interactivity, Structure and Organization, Readability, and Content of the websites. Inter-rater reliability was quantified by calculated kappa coefficients for each element of the instrument. RESULTS Out of more than 27 million collective search results using the three meta-search engines, the first 269 hits were considered for analysis. Only 63 unique patient-oriented sites were acceptable for analysis. 46% were sponsored by commercial entities. Accountability and interactivity were weak across sites. Readability as determined by Flesch-Kincaid and SMOG indices ranged from 6th grade to post-graduate level. 19% were written at a college reading level or higher, however these sites had content quality comparable to those utilizing more elementary prose. 85% of non-commercial domain sites were free of inaccuracies compared to 59% of commercial sites (P=.02). Non-commercial domain sites trended toward more comprehensive content as well as superior readability (average 10th grade reading level compared to average 11th grade reading level, P=.08). The average composite score of all the websites was 2.8 out of a maximum possible weighted score of 7.8, indicating poor global quality of websites. Kappa coefficients were 0.7 or greater for a random sample of 10 websites. CONCLUSIONS This is the first report on the quality of online patient resources in vascular surgery. The study demonstrates that online patient education resources regarding hemodialysis access are poor and require input from the vascular surgery community. Providers need to be aware and understand this issue and seek to inform and mitigate misinformation and potential misguidance. The vascular surgery community should invest in more readable and comprehensive web resources. CLINICALTRIAL n.a

Abstract 12789: Development of the Tool to EMPOwer Surrogate Decision Makers of Comatose Survivors of Cardiac Arrest

Introduction: Surrogate decision makers (SDMs) for comatose survivors of cardiac arrest are often charged with making time-sensitive complex decisions with regard to life-sustaining therapies in a sudden critical illness. We describe the development of a decision aid for SDMs of comatose survivors of cardiac arrest. Methods: Applying recommendations from the International Patient Decision Aid Standards, we developed this decision aid iteratively with the purpose to educate families on post-arrest care and evidence based decision-making. We obtained feedback from stakeholders, including surrogate decision makers, patients, caregivers, nurses and physicians, in focus groups and semi-structured interviews. Results: Informed by interviews with SDMs and the AHA Guidelines, we designed a prototype of the decision aid. Each iteration resulted in a refined version of the aid (Figure). Step 1 included feedback from the Shared Decision-Making Core at the Adult and Child Consortium on Outcomes Research and Delivery Science (ACCORDS). Step 2 incorporated feedback from the ACCORDS Community Engagement Stakeholder group. Step 3 consisted of 10 semi-structured interviews with informal caregivers and patient pairs within the Advanced Heart Failure or Seniors clinics. The document was then reviewed by a team of expert cardiac arrest stakeholders. The aid includes key definitions, a timeline of post-arrest care, factors that support decisions to discontinue or pursue life sustaining therapies, commonly asked questions and an illustration of a patient undergoing post-arrest treatment. The decision aid, entitled T ool to EMPO wer (TEMPO) Surrogate Decision Makers, is written at a 7 th grade reading level. Conclusions: Through a robust iterative process, we designed a decision aid for SDMs of comatose survivors of cardiac arrest. The aid is intended to support the decision to pursue or forego further life-sustaining therapy and to be informative about post-arrest care.

Readability of Online Patient Material Provided by Reflux Centers in the United States

The American Medical Association (AMA) and the National Institutes of Health (NIH) suggest patient education materials should not exceed the sixth-grade reading level. Several studies have shown that patient information has been written well above this reading level across multiple specialties. A search was conducted utilizing the Google Chrome browser and the Google search engine. The key words “Reflux Center” and “GERD Center” were used to identify links to programs within the United States. The web site’s general description of reflux or gastroesophageal reflux disease was copied and pasted into the Readable.io service, and the readability tests were conducted via the program. Of 52 web sites, none had fulfilled the recommended reading level. Our results reveal that readability related to reflux pathology on center web sites is too difficult for the average patient. In order to improve patient education regarding reflux pathology and treatment, reading materials should be improved.

Readability of patient education materials related to radiation safety: What are the implications for patient-centred radiology care?

Background Increasing numbers of patients and carers rely on online resources for healthcare information. Radiation safety can be misunderstood by patients and clinicians and lead to patient anxiety. We aimed to assess the readability of online patient educational materials (PEMs) related to radiation safety. Methods A total of 84 articles pertaining to radiation safety from 14 well-known online resources were identified. PEMs were then analysed using Readability Studio Professional Edition Version 2019. Readability was assessed using eight different instruments: the Flesch-Kincaid Reading Grade Level, Raygor Estimate, SMOG, Coleman–Liau, Fry, FORCAST, Gunning Fog, and Flesch Reading Ease Score formula. The mean reading grade level (RGL) of each article was compared to the 6th and 8th grade reading level using 1-sample t-tests. Results The cumulative mean RGL for all 84 articles was 13.3 (range = 8.6–17.4), and none were written at or below the 6th or 8th grade level. The cumulative mean RGL exceeded the 6th grade reading level by an average of 7.3 levels (95% CI, 6.8–7.8; p < 0.001) and the 8th grade level by an average of 5.3 grade levels (95% CI, 4.8–5.8; p < 0.001). The mean Flesch Reading Ease Score was 39/100 (‘difficult’). Conclusion Currently available online PEMs related to radiation safety are still written at higher than recommended reading levels. Radiation safety is a topic in which the specialist training of radiologists is crucial in providing guidance to patients. Addressing the readability of online PEMs can improve radiology-patient communication and support the shift to a patient-centred model of practice.

Readability levels and thematic content analysis of online and printed lead poisoning informational materials

Background Lead poisoning prevention efforts include preparing and disseminating informational materials such as brochures and pamphlets to increase awareness of lead poisoning, lead exposures and lead poisoning prevention. However, studies have demonstrated that patient education materials for diseases and health conditions are prepared at a reading level that is higher than the recommended 7th–8th grade reading level. This study, therefore, aims to assess the reading levels of lead poisoning informational materials. Methods Lead poisoning materials (N = 31) were accessed from three states; Michigan, New York and Pennsylvania. The readability levels of the materials were assessed using the Flesh Kincaid Grade Level readability test. The Kruskal-Wallis test was conducted to determine if the readability levels differed between the materials obtained from the different states. Thematic content analyses were carried out to assess the inclusion of four themes; definition of lead poisoning, risk factors and exposures, testing and referral and prevention covering 12 subtopics. The Wilcoxon rank sum test was used to examine if there was a difference in the number of subtopics by readability level (dichotomized to >8th grade and < 8th grade). Results The median readability level of the informational materials was 6.7 (IQR: 5.1–8.1). However, there was variability in the readability levels of the materials (range 3.5 to 10.6); materials obtained from Michigan had the highest median reading level of 8.1 (IQR: 6.9–9.0) followed by Pennsylvania. Heterogeneity was observed in the content of the materials. Most of the materials (80%) from Michigan focused on water as a source of lead poisoning, whereas materials from New York and Pennsylvania focused on lead-based paint and other sources. The materials prepared at >8th grade reading level contained fewer topics than materials prepared at <8th grade reading level. Conclusions We find that the materials were often prepared at reading levels lower than the recommended 8th grade reading level. However, there is variability in the reading levels and in the content of the materials. While the materials met the general readability guidelines, they did not necessarily meet the needs of specific groups, especially groups at risk.

Readability Assessment of HPV Vaccination and Cervical Cancer Information: A Systematic Scoping Review

It is important to provide information on HPV vaccination and on early detection and early treatment for cervical cancer. Readability is a key aspect in the success of cancer communication using written health information. We reviewed studies assessing the readability of information on HPV vaccination and cervical cancer. We conducted a systematic literature search in June 2021 using four online databases (Medline, CINAHL, PsycArticles, and PsycINFO). Studies that assessed the readability level of online and offline information regarding HPV vaccination and cervical cancer were included in the review. Twelve articles were deemed fit for study inclusion. Our results showed that most of the materials assessed were difficult to read and higher than eighth-grade reading level. Few of the materials assessed were at the recommended grade 5–6 level or below. Readability assessments of HPV vaccination and cervical cancer information are scarce. Additional studies on the readability of information regarding HPV vaccination and cervical cancer are recommended. Health professionals should develop health information on HPV vaccination and cervical cancer that is easy to read.

Readability Analysis of Online Patient Educational Materials on Blepharoplasty

Blepharoplasty is a common procedure for correction of eyelid appearance. Online educational material among surgical procedures is often written higher than the recommended fifth-grade level. The objective of this study is to evaluate the readability of online patient education materials (OPEMs) available on Google for patients interested in blepharoplasty. Using 6 different pre-established readability scores, the top 100 Google results on blepharoplasty were screened for analysis. A total of 87 OPEMs were found to be relevant yielding an average grade reading level of 11.90 (range 7-20; 95% confidence interval [CI], 11.45-12.33). In addition, OPEMs readability scores were not influenced by whether the author was a medical provider. This study demonstrated the average reading level for available information on blepharoplasty is higher than the recommended fifth-grade reading level. Readability is only one metric for evaluating comprehendible information; however, authors of online medical education need to be more conscious of the public’s ability to comprehend and should tailor their content delivery appropriately.

Assessment of the Readability of Online Patient Education Material from Major Canadian Pediatric Associations (Preprint)

BACKGROUND Online patient education materials (PEMs) are frequently written above the recommended reading level in North America. Poor PEM readability limits the accessibility of medical information to individuals with average to lower literacy levels. Pediatric hospital and association websites have not only been shown to be a preferred source of information among caregivers but have also become a necessity in the COVID-19 pandemic. The readability of Canadian pediatric association websites has not yet been assessed quantitatively. OBJECTIVE To assess the readability of online Canadian pediatric association PEMs to determine if the content of the material is written at a reading level that the majority of Canadians can understand. METHODS PEMs were extracted from ten Canadian pediatric associations and evaluated for their reading level using ten validated readability scales. Associations underwent a difficult word analysis and cross association comparisons were assessed. RESULTS Online PEMs were identified from three pediatric association websites, where the grade reading level was found to be 8.8 +/- 1.8 for the Caring for Kids website, 9.5 +/- 2.2 for the Pediatric Endocrine Group website and 13.1 +/- 2.1 for the Atlantic Pediatric Society website. The difficulty word analysis identified that 19.9% of words were unfamiliar overall. CONCLUSIONS The online PEMs were found to be written above the recommended seventh grade reading level for Canadians. Consideration should be made to create PEMs at an appropriate grade reading level for both patients and their caregivers to encourage health literacy and ultimately promote preventative health behaviours and child health outcomes.

Addressing Health Literacy in Patient Decision Aids: An Update from the International Patient Decision Aid Standards

Background There is increasing recognition of the importance of addressing health literacy in patient decision aid (PtDA) development. Purpose An updated review as part of IPDAS 2.0 examined the extent to which PtDAs are designed to meet the needs of people with low health literacy/socially-disadvantaged populations. Data Sources Reference lists of Cochrane reviews of randomized controlled trials (RCTs) of PtDAs (2014, 2017, and upcoming 2021 versions). Study Selection RCTs that assessed the impact of PtDAs on low health literacy or other socially-disadvantaged groups (i.e., ≥50% participants from socially-disadvantaged groups and/or subgroup analysis in socially-disadvantaged group/s). Data Extraction Two researchers independently extracted data into a standardized form including PtDA development and evaluation details. We searched online repositories and emailed authors to access PtDAs to verify grade reading level, understandability, and actionability. Data Synthesis Twenty-five of 213 RCTs met the inclusion criteria, illustrating that only 12% of studies addressed the needs of low health literacy or other socially-disadvantaged groups. Grade reading level was calculated in 8 of 25 studies (33%), which is recommended in previous IPDAS guidelines. We accessed and independently assessed 11 PtDAs. None were written at sixth-grade level or below. Ten PtDAs met the recommended threshold for understandability, but only 5 met the recommended threshold for actionability. We also conducted a post hoc subgroup meta-analysis and found that knowledge improvements after receiving a PtDA were greater in studies that reported using strategies to reduce cognitive demand in PtDA development compared with studies that did not (χ2 = 14.11, P = 0.0002, I2 = 92.9%). Limitations We were unable to access 13 of 24 PtDAs. Conclusions. Greater attention to health literacy and socially-disadvantaged populations is needed in the field of PtDAs to ensure equity in decision support.