Literacy assessment of preimplantation genetic patient education materials exceed national reading levels

Early, Macy L.; Kumar, Priyanka; Marcell, Arik V.; Lawson, Cathleen; Christianson, Mindy S.; Pecker, Lydia H.

doi:10.1007/s10815-020-01837-z

Cited by 12 publications

(24 citation statements)

References 46 publications

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“…All statistical analyses were conducted using SPSS [42]. The statistical measures produced and tested included (1) interrater reliability (IRR) by Cohen's kappa [23,43] using the two reviewers' independent scores before they reached consensus; (2) the mean, median, standard deviation (SD), interquartile range (IQR), minimum, maximum, and frequency scores associated with PEMAT, Index, and FKGL; and (3) statistical significance of the correlations between material type and PEMAT, Index, and FKGL scores. Material types were coded by the intensity of visual cues as 1=web page, 2=infographic, and 3=video.…”

Section: Discussionmentioning

confidence: 99%

“…The Patient Education Materials Assessment Tool (PEMAT) was used to evaluate and compare the understandability and actionability of the materials [20], the CDC Clear Communication Index (Index) was applied to assess the clarity of the materials [21], and the Flesch-Kincaid Grade Level (FKGL) score was calculated to determine the readability of the materials [22]. All three tools have been used previously to assess consumer and patient health documents [8,[23][24][25][26]. Using this combination of tools provides a multifaceted means of assessing the state health department COVID-19 documents and allows for a holistic evaluation [23,25].…”

Section: Scoring Tools and Interpretationmentioning

confidence: 99%

“…All three tools have been used previously to assess consumer and patient health documents [8,[23][24][25][26]. Using this combination of tools provides a multifaceted means of assessing the state health department COVID-19 documents and allows for a holistic evaluation [23,25].…”

Section: Scoring Tools and Interpretationmentioning

confidence: 99%

“…The higher the score, the more understandable or actionable the materials are regarded [20]. A score of 70% has been used as a benchmark for materials to be considered highly understandable or actionable, with a score below 70% indicating poor understandability or actionability [23,28,29]. This process was previously used to evaluate COVID-19 consumer health materials using the PEMAT [8].…”

Section: Understandability and Actionabilitymentioning

confidence: 99%

“…Each material received a numerical score of either 0/No or 1/Yes for each item. Per the Index User's Guide, individual scores for each material were converted to an overall score on a scale of 100, where 90 or higher is considered passing or "easy to read" [21,23,24].…”

Section: Claritymentioning

confidence: 99%

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A health literacy analysis of the consumer-oriented COVID-19 information produced by ten state health departments

Mani

Ottosen

Fratta

et al. 2021

jmla

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Objective: The COVID-19 pandemic highlights the public’s need for quality health information that is understandable. This study aimed to identify (1) the extent to which COVID-19 messaging by state public health departments is understandable, actionable, and clear; (2) whether materials produced by public health departments are easily readable; (3) relationships between material type and understandability, actionability, clarity, and reading grade level; and (4) potential strategies to improve public health messaging around COVID-19. Methods: Based on US Centers for Disease Control and Prevention statistics from June 30, 2020, we identified the ten states with the most COVID-19 cases and selected forty-two materials (i.e., webpages, infographics, and videos) related to COVID-19 prevention according to predefined eligibility criteria. We applied three validated health literacy tools (i.e., Patient Education Materials Assessment Tool, CDC Clear Communication Index, and Flesch-Kincaid Grade Level) to assess material understandability, actionability, clarity, and readability. We also analyzed correlations between scores on the three health literacy tools and material types.Results: Overall, COVID-19 materials had high understandability and actionability but could be improved in terms of clarity and readability. Material type was significantly correlated with understandability, actionability, and clarity. Infographics and videos received higher scores on all tools.Conclusions: Based on our findings, we recommend public health entities apply a combination of these tools when developing health information materials to improve their understandability, actionability, and clarity. We also recommend using infographics and videos when possible, taking a human-centered approach to information design, and providing multiple modes and platforms for information delivery.

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Section: Discussionmentioning

confidence: 99%

Section: Scoring Tools and Interpretationmentioning

confidence: 99%

Section: Scoring Tools and Interpretationmentioning

confidence: 99%

Section: Understandability and Actionabilitymentioning

confidence: 99%

Section: Claritymentioning

confidence: 99%

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A health literacy analysis of the consumer-oriented COVID-19 information produced by ten state health departments

Mani

Ottosen

Fratta

et al. 2021

jmla

View full text Add to dashboard Cite

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Expanded carrier screening for reproductive risk assessment: An evidence‐based practice guideline from the National Society of Genetic Counselors

Sagaser

Malinowski²,

Westerfield

et al. 2023

Journal of Genetic Counseling

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Expanded carrier screening (ECS) intends to broadly screen healthy individuals to determine their reproductive chance for autosomal recessive (AR) and X‐linked (XL) conditions with infantile or early‐childhood onset, which may impact reproductive management (Committee Opinion 690, Obstetrics and Gynecology, 2017, 129, e35). Compared to ethnicity‐based screening, which requires accurate knowledge of ancestry for optimal test selection and appropriate risk assessment, ECS panels consist of tens to hundreds of AR and XL conditions that may be individually rare in various ancestries but offer a comprehensive approach to inherited disease screening. As such, the term “equitable carrier screening” may be preferable. This practice guideline provides evidence‐based recommendations for ECS using the GRADE Evidence to Decision framework (Guyatt et al., BMJ, 2008, 336, 995; Guyatt et al., BMJ, 2008, 336, 924). We used evidence from a recent systematic evidence review (Ramdaney et al., Genetics in Medicine, 2022, 20, 374) and compiled data from peer‐reviewed literature, scientific meetings, and clinical experience. We defined and prioritized the outcomes of informed consent, change in reproductive plans, yield in identification of at‐risk carrier pairs/pregnancies, perceived barriers to ECS, amount of provider time spent, healthcare costs, frequency of severely/profoundly affected offspring, incidental findings, uncertain findings, patient satisfaction, and provider attitudes. Despite the recognized barriers to implementation and change in management strategies, this analysis supported implementation of ECS for these outcomes. Based upon the current level of evidence, we recommend ECS be made available for all individuals considering reproduction and all pregnant reproductive pairs, as ECS presents an ethnicity‐based carrier screening alternative which does not rely on race‐based medicine. The final decision to pursue carrier screening should be directed by shared decision‐making, which takes into account specific features of patients as well as their preferences and values. As a periconceptional reproductive risk assessment tool, ECS is superior compared to ethnicity‐based carrier screening in that it both identifies more carriers of AR and XL conditions as well as eliminates a single race‐based medical practice. ECS should be offered to all who are currently pregnant, considering pregnancy, or might otherwise biologically contribute to pregnancy. Barriers to the broad implementation of and access to ECS should be identified and addressed so that test performance for carrier screening will not depend on social constructs such as race.

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Preimplantation Genetic Testing for Adult-Onset Conditions

Hershlag

2023

Case Studies in the Ethics of Assisted Reproduction

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Literacy assessment of preimplantation genetic patient education materials exceed national reading levels

Cited by 12 publications

References 46 publications

A health literacy analysis of the consumer-oriented COVID-19 information produced by ten state health departments

A health literacy analysis of the consumer-oriented COVID-19 information produced by ten state health departments

Expanded carrier screening for reproductive risk assessment: An evidence‐based practice guideline from the National Society of Genetic Counselors

Preimplantation Genetic Testing for Adult-Onset Conditions

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