丢失印刷品:阅读有关苯丙酮尿症的在线信息有困难。

IF 1.5 Q4 GENETICS & HEREDITY Journal of Community Genetics Pub Date : 2023-04-01 DOI:10.1007/s12687-022-00626-8
Lalitha Samuel, Joseph Fera, Corey H Basch
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引用次数: 1

摘要

苯丙酮尿症(PKU)是最常见的先天性氨基酸代谢错误,需要患者严格控制饮食中的苯丙氨酸。由于这可能是一个令人困惑和担忧的诊断,患者和亲人可能会被吸引去了解更多。公民利用与健康有关的数字信息的一个关键因素是确保这些信息易于阅读。本研究评估了100篇与北京大学相关的数字文章的可读性,并探讨了在线信息来源对这些文章可读性的影响。每篇文章使用在线可读性软件进行5次可读性测试。在被评估的100个网站中,34%是商业来源。在剩下的66个网站中,40%有。org和17%有。gov扩展名。所有5个测试都证实,绝大多数样本是在不可接受的阅读水平上编写的。事实上,超过三分之二的样本在三个测试的难度范围内获得了可读性分数,而剩下的两个人分别认为49%和45%的样本难以阅读。就五项措施中的两项而言,商业来源的网站被认为比其他网站更难阅读。尽管网上有大量的PKU信息,但大多数信息对于普通人来说可能是无法理解的,因此无法帮助患者和护理人员管理他们的病情。数字健康宣传信息的作者有机会通过使用易于理解、易于阅读的语言有效地实现其目标。
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Lost in print: difficulty in reading online information pertaining to phenylketonuria.

Phenylketonuria (PKU) is the most prevalent inborn error of amino acid metabolism, necessitating patients to strictly restrict dietary phenylalanine. As this can be a confusing and concerning diagnosis, patients and loved ones will likely be drawn to learn more. A critical factor for citizens to harness the health-related digital information is to ensure that it is easy to read. This study assessed the readability of 100 digital articles related to PKU and explored the effect of the source of online information on the readability of these articles. For each article, 5 readability tests were conducted using on-line readability software. From the 100 assessed websites, 34% were commercially sourced. Of the remaining 66 sites, 40% had.org and 17% had.gov extensions. All 5 tests confirm that a large majority of the sample was written at an unacceptable reading level. In fact, over two-thirds of the sample received a readability score within the difficult range for three of the tests, while the remaining two deemed 49% and 45% of the sample as difficult to read, respectively. Commercially sourced websites were deemed to be more difficult to read than the other sites with respect to the two of the five measures. Despite the large amount of PKU information online, most of it may be incomprehensible to the average person and thus miss the mark in helping patients and caregivers manage their condition. Opportunities exist for authors of digital health promotional information to effectively achieve their goal by using comprehensible, easy-to-read language.

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来源期刊
Journal of Community Genetics
Journal of Community Genetics GENETICS & HEREDITY-
CiteScore
3.30
自引率
5.30%
发文量
54
期刊介绍: The Journal of Community Genetics is an international forum for research in the ever-expanding field of community genetics, the art and science of applying medical genetics to human communities for the benefit of their individuals. Community genetics comprises all activities which identify persons at increased genetic risk and has an interest in assessing this risk, in order to enable those at risk to make informed decisions. Community genetics services thus encompass such activities as genetic screening, registration of genetic conditions in the population, routine preconceptional and prenatal genetic consultations, public education on genetic issues, and public debate on related ethical issues. The Journal of Community Genetics has a multidisciplinary scope. It covers medical genetics, epidemiology, genetics in primary care, public health aspects of genetics, and ethical, legal, social and economic issues. Its intention is to serve as a forum for community genetics worldwide, with a focus on low- and middle-income countries. The journal features original research papers, reviews, short communications, program reports, news, and correspondence. Program reports describe illustrative projects in the field of community genetics, e.g., design and progress of an educational program or the protocol and achievement of a gene bank. Case reports describing individual patients are not accepted.
期刊最新文献
Key contextual factors involved with participation in medical and genomic screening and research for African American and White Americans: a qualitative inquiry. Factors influencing pregnant women's decision to accept or decline prenatal screening and diagnosis - a qualitative study. Acceptability of dried blood spot collection by primary caregivers of Filipino patients with maple syrup urine disease (MSUD) and phenylketonuria (PKU). Opportunities and challenges for identifying undiagnosed Rare Disease patients through analysis of primary care records: long QT syndrome as a test case. Feasibility of an environmental scan-based approach to collecting information about factors impacting cancer genetics services in Latin American countries.
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