■患有镰状细胞病(SCD)的青少年和年轻人从儿科过渡到成人医疗保健,面临着与急性医疗保健服务使用和死亡率增加相关的高风险时期。尽管59%的美国公民报告使用互联网获取医疗保健信息,基于网络的质量,尚未评估有关SCD护理过渡的面向患者的资源。
■本研究旨在评估SCD上基于Web的健康信息的质量和可读性,特别是与SCD患者向成年过渡有关。该研究还将2018年确定的网站的可读性和内容得分与2021年的可读性和内容得分进行了比较,以评估质量随时间的变化。
■在互联网上搜索有关SCD护理过渡的信息时,青少年可以使用代表短语的关键字,包括“羟基脲”和“SCD过渡”,“已识别。2021年7月,使用Google进行了使用关键字的网络搜索,雅虎,还有Bing.收集了来自每个搜索的前20个链接。重复的网站,学术期刊,与SCD医疗保健过渡无关的网站被排除.网站根据来源进行了分类:卫生部门,医院或私人临床医生,专业社会,和其他网站。网站使用健康在线基金会行为准则(HONcode)进行评估,轻松阅读(FRE),Flesch-Kincaid等级(FGL),确保患者的质量信息(EQIP),和新的SCD内容清单(SCDCC)。EQIP和SCDCC评分范围从0-到100。每个网站都由2名研究助理审查,并评估了评估者间的可靠性。计算描述性统计数据。
■在收集的900个网站中,67(7.4%)符合纳入标准:13个卫生部门,7医院或私人临床医生,33专业社会,其他14个网站67个网站中有15个(22%)拥有HONcode认证。与没有HONcode认证的网站相比,具有HONcode认证的网站具有更高的FRE和EQIP分数和更低的FGL分数,反映更大的可读性。没有HONcode认证的网站SCDCC分数更高,反映更大的临床内容。只有7个(10%)的网站符合美国国立卫生研究院关于七年级或更低阅读水平的建议。根据EQIP分数,6个(9%)网站质量较高。SCDCC的平均评分为20.60(SD22.14),满分100分。EQIP和SCDCC评分的评分者间可靠性良好(组内相关性分别为0.718和0.897)。没有网站来源的平均EQIP得分明显较高,FRE,FGL,或SCDCC得分高于其他得分(所有P<0.05)。
■尽管在网络上寻求医疗保健信息非常普遍,互联网上有关SCD护理过渡的信息总体质量较差。对有关SCD护理过渡的当前基于网络的医疗保健信息的更改将通过提供期望而使过渡青年受益,知识,技能,以及提高自我效能感的工具。
UNASSIGNED: Adolescents and young adults with sickle cell disease (SCD) transitioning from pediatric to adult health care face a high-risk period associated with increased use of acute health care services and mortality. Although 59% of American citizens report using the internet for health care information, the quality of web-based, patient-facing resources regarding transition in SCD care has not been evaluated.
UNASSIGNED: This study aimed to evaluate the quality and readability of web-based health information on SCD, especially as it pertains to the transition to adulthood for inidividuals with SCD. The study also compared the readability and content scores of websites identified in 2018 to those from 2021 to assess any change in quality over time.
UNASSIGNED: Keywords representing phrases adolescents may use while searching for information on the internet regarding transition in SCD care, including \"hydroxyurea\" and \"SCD transition,\" were identified. A web-based search using the keywords was conducted in July 2021 using Google, Yahoo, and Bing. The top 20 links from each search were collected. Duplicate websites, academic journals, and websites not related to SCD health care transition were excluded. Websites were categorized based on the source: health department, hospital or private clinician, professional society, and other websites. Websites were assessed using Health On the Net Foundation code of conduct (HONcode), Flesch Reading Ease (FRE), Flesch-Kincaid Grade Level (FGL), Ensuring Quality Information for Patients (EQIP), and a novel SCD content checklist (SCDCC). EQIP and SCDCC scores range from 0- to 100. Each website was reviewed by 2 research assistants and assessed for interrater reliability. Descriptive statistics were calculated.
UNASSIGNED: Of the 900 websites collected, 67 (7.4%) met the inclusion criteria: 13 health department, 7 hospital or private clinician, 33 professional society, and 14 other websites. A total of 15 (22%) out of 67 websites had HONcode certification. Websites with HONcode certification had higher FRE and EQIP scores and lower FGL scores than those without HONcode certification, reflecting greater readability. Websites without HONcode certification had higher SCDCC scores, reflecting greater clinical content. Only 7 (10%) websites met the National Institutes of Health recommendation of a seventh-grade or lower reading level. Based on EQIP scores, 6 (9%) websites were of high quality. The mean SCDCC score was 20.60 (SD 22.14) out of 100. The interrater reliability for EQIP and SCDCC ratings was good (intraclass correlation: 0.718 and 0.897, respectively). No source of website scored significantly higher mean EQIP, FRE, FGL, or SCDCC scores than the others (all P<.05).
UNASSIGNED: Although seeking health care information on the web is very common, the overall quality of information about transition in SCD care on the internet is poor. Changes to current web-based health care information regarding SCD care transitions would benefit transitioning youth by providing expectations, knowledge, skills, and tools to increase self-efficacy.