Quality of Online Information on Transition to Adulthood for Individuals with Sickle Cell Disease 1
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Thomas Annesi , Caren Steinway LMSW MPH , Steffi Shilly , Jane Lindahl , Sophia Jan MD MSHP 1
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Donald and Barbara Zucker School of Medicine at Hofstra/Northwell Division of General Pediatrics, Cohen Children’s Medical Center, Northwell Health
Background
Results
● Sickle cell disease (SCD) is the most common inherited blood disorder, affecting approximately 100,00 Americans¹ ● Healthcare systems often fail to prepare patients with SCD for transition from pediatric to adult care, leading these individuals to search for online resources to support their transition process ● Approximately 72% of internet users have accessed the internet at least once for healthcare³ ● The quality of online information regarding transition for individuals with SCD has not be validated
Aims ● To evaluate the readability and quality of online resources about transition for individuals with SCD ● To compare the readability and content of transition information for individuals with SCD from health department, hospital/clinic, professional body and other websites
Methods ● Websites that discussed SCD transition were collected from Google, Bing, Yahoo, DuckDuckgo and Ask in 2018. Keyword such as “Sickle cell disease” and “Healthcare transition” were determined by team consensus. The first 20 websites from combination of search terms for each search engine were collected ● Website were excluded if they did not pertain to health information, denied direct access or were identified previously under a different URL ● Websites were assessed using a Flesch Reading Ease (FRE) Score, Ensuring Quality of Information for Patients (EQIP), Sickle Cell Disease Transition Content Checklist (SCDCC), and HONCode Analytical Method
Purpose
Description
Scoring
Recommended Score
FRE
Readability
Range from 0-100 with higher scores correlating with greater ease of reading
Readablity.io
80-90⁴
EQIP
Quality of patient-facing information
Ranges from 0-100% with Graded by two higher scores correlating research with higher quality assistants (SS
75%⁵
Results Continued
● 9522 websites were identified using the aforementioned search engines ○ 92 website met inclusion criteria Figure 1: The average FRE, EQIP, and SCD score and the proportion of websites with HONCode certification for each website category. Category
Average FRE
Average EQIP
Average SCD Content Checklist Score
HONCode
Hospital/Private Clinician
42.34 ± 22.69
60.10 ±11.94
25.11 ± 22.42
7/11
Healthcare Department
52.95 ± 11.49
59.23 ±10.52
19.87 ± 13.99
2/38
Professional Society
56.37 ± 13.75
54.06 ± 10.32
21.23 ± 18.3
2/21
Other
50.45 ± 14.46
52.89 ± 8.43
14.20 ± 6.76
15/22
● Each category of website fell below the recommended FRE score of 80-90 with no website achieving an FRE score within this range. Anova revealed a difference between the mean FRE scores of each category of website (p=.0414) with the professional society categories scoring the highest
● The average Sickle Cell Content Scores all fell below 75% with 1 website scoring above 75%. Anova revealed no difference in the average SCD Content Scores (p=.157)
● Websites with HONCode certification had higher FRE scores (p=0188)
Figure 5: FRE, EQIP and SCD Content score of HONCode websites and websites without HoONCode certification
Conclusions and Future Directions ● All website categories failed to reach the recommended EQIP score of 75% with 6 websites scoring above 75%. Anova revealed a difference between the mean EQIP score of each category of website (p=.0410) with the hospital/private clinician category scoring the highest
● Individuals with SCD transitioning from pediatric to adult health care would benefit from improved readability of online SCD transition information. Readability can be improved by decreasing the length of sentence and using words with fewer syllables. ○ Websites can also be improved by including frequently missed EQIP and SCD items ● Next steps should include updating the search to include websites reviewed 2021. Further, guidelines for websites educating individuals with SCD on transition to adulthood should be developed.
and JL)
SCD Transition Content Checklist
Ranges from 0-100% with Quality of patient-facing SCD higher scores correlating healthcare transition with higher quality information
Graded by two research assistants (SS and JL)
NA
Certification given to websites that meet 8 criteria for website quality
Presence indicated by HONCode seal
Presence of certification
HONCode WHO certification for website quality
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Resources 1. 2. 3. 4. 5. 6. 7. 8.
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