Quality of Online Health Information Regarding Sickle Cell Disease Transition

Abstract Introduction: As modern medicine has decreased mortality rates of children with Sickle Cell Disease (SCD), patients with SCD are living into adulthood and transitioning to adult care. However transition for these patients has proven to be a vulnerable time. Thus, it is important to prepare youth adequately for chronic care transition through expectations, knowledge, skills, efficacy, and support. The advancement of the Internet has provided patients a primary source to search and gather health-related knowledge. Internet usage is almost ubiquitous among American youth with 92% of them accessing the Internet regularly. Previous studies have shown a wide spectrum in the quality of information available on the Internet. Yet, to the best of our knowledge, a systematic review of online health information regarding transition of patients with SCD has not been conducted. Methods: Data were collected in December 2017 and January 2018 using the 5 search engines that have been identified as being most commonly utilized. Keywords were selected to represent phrases that people may use while searching for information on the Internet regarding SCD transition. Combinations of the keywords were used in the searches, and the first 20 links for each search term were considered in our study. Incognito window was used so that previous searches did not influence the results from the search engines. Websites that met the required inclusion/ exclusion criteria were included in this study. Websites were divided as SCD transition or non-SCD transition specific websites based on whether they mentioned sickle cell disease or not. Websites were classified as academic/educational institution, health department, hospital/private clinician, professional body, or other (includes Wiki, WebMD, and etc). Flesch Reading Ease (FRE) Score was used to evaluate website readability. A novel 12-item transition-specific content tool was produced to evaluate website content. Website quality was evaluated by assessing for the presence or absence of the HONcode certification and using the EQIP tool. A high quality website was defined as having an EQIP Score ≥ 75% in this study. Website quality and content was scored by two research assistants employed in the General Pediatrics department at Northwell Health. Statistical analysis was performed using Excel and online tools. A p-value <0.05 was the criterion for statistical significance. Results: Using the combination of keywords decided, 9522 websites were identified using the selected search engines. Of the 9522 websites, 157 eligible websites met the inclusion criteria and were analyzed. 92 websites were SCD specific links and 65 websites were non-SCD specific links. 27 websites had a HONCode certification issued to them. Only 1 non-SCD website and 26 SCD specific websites had HONCode certifications. The average EQIP score was 59.0 ± 3.0. The average EQIP score for SCD specific websites was 56.9 ± 5.2 and was 61.1 ± 5.0 for non-SCD specific websites. Based on the cutoff value of an EQIP score ≥ 75%, 6 SCD specific websites and 13 non-SCD specific websites are of high quality. The interrater reliability in EQIP ratings was good (Pearson correlation: 0.660). The average FRE score was 49.0 ± 4.0. The average FRE score was 51.9 ± 13.7 for SCD specific websites and 46.1 ± 15.8 for non-SCD specific websites. The average website content score was 28.6 ± 10.7. The average website content score was 21.0 ± 7.1 for SCD specific websites and 36.1 ± 10.2 for non-SCD specific websites. The results of the two tailed t-test indicated that FRE scores between HONCode certified and non-HONCode certified websites were significant for among SCD websites as well as among combined SCD and non-SCD websites (p < 0.05). All identified websites will also be reviewed by two physicians who specialize in caring for young adults with chronic illnesses. Analyses from their review will be conducted prior to the conference. Conclusion: Although seeking health care information online is very common, the overall quality of information about sickle cell disease transition on the Internet is poor. Steps should be taken to make changes that will allow for adequate online healthcare information regarding sickle cell disease transition. By doing this, youth going through transition will be prepared by having competent expectations, knowledge, skills, efficacy, and support available on the Internet. Disclosures No relevant conflicts of interest to declare.