ArticleJournal of community genetics2025
Evaluation of readability and understandability of biotinidase deficiency information online.
Article in Journal of community genetics, 2025. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Not yet cited in PubMed.
What it found
Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.
The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.
The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.
Who cites it
0 citing papers in PubMed.
No citing paper in PubMed yet.
Corrections and comments
PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.
Authors and funding
2 authors.
Funding
No grant is acknowledged in the PubMed record.
Abstract
This study evaluates the readability and understandability of online resources on biotinidase deficiency, a metabolic disorder included in newborn screening programs. The aim is to determine whether these materials meet health literacy standards. Fifty online documents were initially identified via Google searches using "biotinidase deficiency." After excluding academic articles, duplicates, and inaccessible resources, 21 documents were analyzed. They were categorized as non-profit (hosted on domains such as .org, .gov, or .edu, representing public institutions and academic organizations)(13) or private (hosted on commercial domains like .com, often linked to medical facilities) (8) based on domain extensions. Readability was assessed using Readable.io, providing Flesch Reading Ease scores and Flesch-Kincaid Grade Level. The Patient Education Materials Assessment Tool (PEMAT) was used to evaluate understandability and actionability, with scores averaged by four reviewers. Statistical analyses compared group differences. Private articles showed markedly higher Flesch-Kincaid Grade Level scores, referring to higher reading difficulty, in contrast to non-profit articles (mean ± SD: 13.9 ± 2.2 vs. 10.7 ± 2.0; p = 0.002).There was no statistically significant difference in PEMAT understanding (U) scores between private and non-profit articles (mean ± SD: 52.0 ± 10.5 vs. 42.3 ± 11.4; p = 0.060) or actionability (A) scores (mean ± SD: 29.1 ± 20.0 vs. 13.4 ± 18.0; p = 0.063). Furthermore, articles classified as having lower readability levels (D and E) exhibited markedly reduced actionability scores compared to those with higher readability levels (A to C), indicating a correlation between text complexity and practical use. The recommended health literacy standards for biotinidase deficiency are not met by most online sources. In particular, materials that are difficult to read are less applicable and of limited benefit to parents or caregivers. Given that such readers are expected to take important actions such as conducting screenings or consulting healthcare professionals, the importance of making these materials more appropriate is significant. These findings highlight the importance of patient-centered, clear, and actionable health communication, particularly for conditions identified in newborn screening programmes.
Indexed as
Identifiers
What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.