Dataset Information

Quality of Online Information on Multiple Myeloma Available for Laypersons.

ABSTRACT: Online information can increase patients' competence and engagement. However, there are concerns regarding invalid information. Overall, 300 websites and 50 YouTube videos on multiple myeloma (MM) were evaluated. The websites did not differ between the search engines or search ranks. The median time since the last update was 9 months. The 63 unique websites showed a poor general quality (median JAMA score 2 of 4, only 18% with a valid HON certificate). The patient- (user-) focused quality was medium to poor (median sum DISCERN score 41 out of 80 points). The overall reading level was difficult requiring at least a 12th US school grade. The content level was low (median 24 out of 73 points). Sixteen percent contained misleading/wrong facts. Websites provided by foundation/advocacies showed a significantly higher general and patient- (user-) focused quality. For videos, the median time since upload was 18 months. Judged by the HON foundation score ~80% of videos showed a medium general quality. The patient- (user-) focused quality was medium to poor (median sum DISCERN score 43 points). The content level was very low (median 8 points). MM relevant websites and videos showed a medium to low general, patient- (user-) focused and content quality. Therefore, incorporation of quality indices and regular review is warranted.

SUBMITTER: Staemmler H

PROVIDER: S-EPMC9324394 | biostudies-literature | 2022 Jun

REPOSITORIES: biostudies-literature

ACCESS DATA

Publications

Quality of Online Information on Multiple Myeloma Available for Laypersons.

Staemmler Henrike H Sauer Sandra S Kreutzer Emma Pauline EP Brandt Juliane J Jordan Karin K Kreuter Michael M Kriegsmann Mark M Goldschmidt Hartmut H Müller-Tidow Carsten C Egerer Gerlinde G Kriegsmann Katharina K

Current oncology (Toronto, Ont.) 20220627 7

Online information can increase patients' competence and engagement. However, there are concerns regarding invalid information. Overall, 300 websites and 50 YouTube videos on multiple myeloma (MM) were evaluated. The websites did not differ between the search engines or search ranks. The median time since the last update was 9 months. The 63 unique websites showed a poor general quality (median JAMA score 2 of 4, only 18% with a valid HON certificate). The patient- (user-) focused quality was me ...[more]

PMID: 35877218

Similar Datasets

Project description:BackgroundThe written format and literacy competence of screen-based texts can interfere with the perceived trustworthiness of health information in online forums, independent of the semantic content. Unlike in professional content, the format in unmoderated forums can regularly hint at incivility, perceived as deliberate rudeness or casual disregard toward the reader, for example, through spelling errors and unnecessary emphatic capitalization of whole words (online shouting).ObjectiveThis study aimed to quantify the comparative effects of spelling errors and inappropriate capitalization on ratings of trustworthiness independently of lay insight and to determine whether these changes act synergistically or additively on the ratings.MethodsIn web-based experiments, 301 UK-recruited participants rated 36 randomized short stimulus excerpts (in the format of information from an unmoderated health forum about multiple sclerosis) for trustworthiness using a semantic differential slider. A total of 9 control excerpts were compared with matching error-containing excerpts. Each matching error-containing excerpt included 5 instances of misspelling, or 5 instances of inappropriate capitalization (shouting), or a combination of 5 misspelling plus 5 inappropriate capitalization errors. Data were analyzed in a linear mixed effects model.ResultsThe mean trustworthiness ratings of the control excerpts ranged from 32.59 to 62.31 (rating scale 0-100). Compared with the control excerpts, excerpts containing only misspellings were rated as being 8.86 points less trustworthy, those containing inappropriate capitalization were rated as 6.41 points less trustworthy, and those containing the combination of misspelling and capitalization were rated as 14.33 points less trustworthy (P<.001 for all). Misspelling and inappropriate capitalization show an additive effect.ConclusionsDistinct indicators of incivility independently and additively penalize the perceived trustworthiness of online text independently of lay insight, eliciting a medium effect size.

Project description:BackgroundOver 20,000 parents in the United States face the challenge of participating in decisions about whether to use life support for their infants born on the cusp of viability every year. Clinicians must help families grasp complex medical information about their baby's immediate prognosis as well as the risk for significant long-term morbidity. Patients faced with this decision want supplemental information and frequently seek medical information on the Internet. Empirical evidence about the quality of websites is lacking.ObjectiveWe sought to evaluate the quality of online information available about periviable birth and treatment options for infants born at the cusp of viability.MethodsWe read a counseling script to 20 pregnant participants that included information typically provided by perinatal and neonatal providers when periviable birth is imminent. The women were then asked to list terms they would use to search the Internet if they wanted additional information. Using these search terms, two reviewers evaluated the content of websites obtained via a Google search. We used two metrics to assess the quality of websites. The first was the DISCERN instrument, a validated questionnaire designed to assess the quality of patient-targeted health information for treatment choices. The second metric was the Essential Content Tool (ECT), a tool designed to address key components of counseling around periviable birth as outlined by professional organizations. DISCERN scores were classified as low quality if scores were 2, fair quality if scores were 3, and high quality if scores were 4 or higher. Scores of 6 or higher on the ECT were considered high quality. Interreviewer agreement was assessed by calculated kappa statistic.ResultsA total of 97 websites were reviewed. Over half (57/97, 59%) were for-profit sites, news stories, or personal blogs; 28% (27/97) were government or medical sites; and 13% (13/97) were nonprofit or advocacy sites. The majority of sites scored poorly in DISCERN questions designed to assess the reliability of information presented as well as data regarding treatment choices. Only 7% (7/97) of the websites were high quality as defined by the DISCERN tool. The majority of sites did not address the essential content defined by the ECT. Importantly, only 18% of websites (17/97) indicated that there are often a number of reasonable approaches to newborn care when faced with periviable birth. Agreement was strong, with kappa ranging from .72 to .91.ConclusionsMost information about periviable birth found on the Internet using common search strategies is of low quality. News stories highlighting positive outcomes are disproportionately represented. Few websites discuss comfort care or how treatment decisions impact quality of life.

Project description:BACKGROUND:Online health forums are widely used, but the quality of advice differs as much as the knowledge backgrounds of the audience members who receive the advice. It is important to understand how people judge the information given online. In line with the communication accommodation theory (CAT), online forums represent specific social contexts of communication which can present either accommodative or nonaccommodative language to an audience. Accordingly, use of accommodative or nonaccommodative language might affect people's perceived trust in the communicator. OBJECTIVE:The objective of this study was to investigate how experts who use accommodative (vs nonaccommodative) language are evaluated by passive users of an online forum. METHODS:Participants (n=98) took part in an online experiment and read experts' posts about 10 nutrition myths. Following a 2 x 2 mixed design, experts' posts were written using either low or high amounts of medical technical jargon (MTJ) (within factor) and were directed at different audiences (mainly other medical experts [in a professional forum] vs a user group mainly comprising laypersons [in an advisory forum]) (between factor). Accommodation occurred where experts used high amounts of MTJ to address other medical experts in the professional forum; it also occurred when experts used low amounts of MTJ to address laypersons in the advisory forum. Conversely, nonaccommodation occurred when experts used high amounts of MTJ in the advisory forum and low amounts of MTJ in the professional forum. In each condition, participants evaluated the credibility of the information, the trustworthiness of the experts, and the accommodation by the experts. RESULTS:Overall, participants judged the credibility of information to be higher when experts used MTJ that was accommodative to the designated audience, F1,95=3.10, P=.04, ηp2=.031. In addition, participants judged the experts in professional forums to be more trustworthy than experts in advisory forums (all F1,96≥3.54, P ≤.03, ηp2≥.036). Moreover, participants rated experts who used high amounts of MTJ to have higher competence (F1,96=37.54, P<.001, ηp2=.28], lower integrity (F1,96=10.77, P=.001, ηp2=.101), and lower benevolence (F1,96=9.75, P=.002, ηp2=.092), as well as to have lower perceived accommodation to the audience (all F1,96≥72.17, P<.001, ηp2≥.43) compared with experts who used low MTJ. CONCLUSIONS:To provide health information online that is perceived as credible, experts should consider using similar language as the language used by the addressed audience. As it is often impossible to determine the exact makeup of an online audience, further research might investigate whether having experts explicitly declare which audience they intend to address can help people to more reliably assess an expert's trustworthiness. Furthermore, as people assess information differently depending on the context of online communication, it would be valuable for research to consider other aspects of the context beyond those of the audience.

Dataset Information

Quality of Online Information on Multiple Myeloma Available for Laypersons.

Publications

Quality of Online Information on Multiple Myeloma Available for Laypersons.

Similar Datasets

OmicsDI is part of the ELIXIR infrastructure

Tweets