Quality of Online Sickle Cell Disease Resources for Healthcare Transition: A Scoping Review (Preprint)

BACKGROUND Adolescents and young adults with Sickle Cell Disease (SCD) transitioning from pediatric to adult healthcare face a high-risk period associated with increased use of acute healthcare services and mortality. While 59% of Americans report using the internet for health care information, the quality of online patient-facing resources regarding SCD transition has not been evaluated. OBJECTIVE This study aims to evaluate the quality and readability of online health information on Sickle Cell Disease, especially as it pertains to transition to adulthood. The study will also compare the readability and content scores of the websites from 2018 to those from 2021 to assess any change in quality over time. METHODS Keywords representing phrases adolescents may use while searching for information on the internet regarding SCD transition, including “Hydroxyurea” and “SCD Transition”, were identified. An online 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 healthcare transition were excluded. Websites were categorized based on source: health departments/government body, hospitals/private clinics, professional organizations, and other. Websites were assessed using 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 0-100. Each website was reviewed by two research assistants and assessed for inter-rater reliability. Descriptive statistics were calculated. RESULTS Of 900 websites collected, 67 met inclusion criteria: 13 health departments, 7 hospitals or private clinics, 33 professional societies and 14 other. Fifteen websites (22.4%) had HONCode certification. Websites with HONCode had higher FRE and EQIP scores and lower FGL scores than those without HONCode, reflecting greater readability. Websites without HONCode had higher SCDCC scores, reflecting greater clinical content. Only 7 websites (10.4%) met the NIH recommendation of a 7th grade or lower reading level. Based on EQIP score, 6 websites (9.0%) were of high quality. The average SCDCC score was 20.6 ± 22.14; scores can range from 0-100. The interrater reliability in EQIP and SCDCC ratings was good (ICC: 0.718 and 0.897 respectively). No source of website scored significantly higher average EQIP, FRE, FGL, or SCDCC scores than the others. CONCLUSIONS Although seeking health care information online is very common, the overall quality of information about SCD transition on the internet is poor. Changes to current online healthcare information regarding SCD transition would benefit transitioning youth by providing expectations, knowledge, skills, and efficacy.