Background/Purpose: Ehlers-Danlos Syndrome (EDS) is a heritable connective tissue disease that presents in myriad ways. Education is an essential component in managing this complex condition. Patients are increasingly relying on the internet to obtain health information. There is a lack of data looking at the quality of EDS patient education websites. In this study, we aimed to address this gap by assessing the quality, content and readability of existing websites specific to EDS.
Methods: The term “Ehlers Danlos Syndrome” was searched in Google.com and Bing.com. 60 results were retrieved from each search engine. Duplicates were removed and physician, commercial, news and video specific websites were excluded. Two independent readers analyzed the websites for website quality using two validated tools (DISCERN quality assessment instrument and The Health on the Net (HON) foundation certification). Web site content was scored by a self-developed content analysis tool based on established evidence and EDS standards of practice. Website Readability was assessed via the Flesch-Kincaid Reading Grade Level (FKGL) and Flesch Reading Ease Score (FRES).
Results: Of the 120 websites identified, 29 websites remained after the exclusion criteria were applied. Inter-observer reliability between the two readers was substantial, with ICC scores of 0.76 (95% CI=0.50, 0.89) and 0.71 (95% CI=0.40, 0.86) for total content and DISCERN scoring respectively. The mean content score was low at 31.55 out of a total of 80 (SD=17.92). Although most websites reported symptoms and diagnosis information, treatment content scores were generally lower. Only 37.93% mentioned self-management approach. The psychological component was especially neglected with 65.52% of websites failing to address this topic. The mean DISCERN score was poor at 36.21 out of a total of 80 (SD=11.71). 65.50% of websites had poor DISCERN scores, and only 6.90% reached the good to excellent range. Only 24.14% of the websites had the HON foundation certification seal. Regarding readability, the average FKGL was high at 11.42 (SD=0.91), with none of the website achieving the recommended FKGL scores of ≤6. The FRES was low at 38.68 out of a total of 100 (SD=9.60), the recommended score is ≥80.
Conclusion: Although most of the websites studied provided a general description of EDS, most failed to achieve the required quality, this is especially so for treatment advice. Readability scores also did not meet the recommended standards. Future online patient education endeavours specific to EDS need to address these shortcomings and include more treatment advice, especially as self-management is an essential component of EDS care

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ACR Meeting Abstracts - https://acrabstracts.org/abstract/quality-content-and-readability-assessment-of-patient-education-websites-relating-to-ehlers-danlos-syndrome/