SUN-SHINE Sarcoma Systematic Environmental Scan: Evaluation of the Readability, Understandability, and Actionability of Websites Supporting Patients Diagnosed With Sarcoma and Their Caregivers

Abstract

Objective: Sarcoma is a rare cancer with complex treatment phases, leaving people with sarcoma and their carers with unmet information and support needs. This review provides an evaluation of sarcoma websites internationally to inform the development of online resources for the SUN-SHINE sarcoma project, aimed at addressing the unmet needs of people with a sarcoma diagnosis. Methods: A review of sarcoma information websites was conducted via Google search, with the first 3 pages of results of 19 searches undergoing eligibility screening. Of 95 websites yielded by the initial screening, 40 were eligible for assessment using the Flesch-Kincaid Grade Level (FKGL), Gunning-Fog Index (GFI), Coleman-Liau Index (CLI), and Simple Measure of Gobbledygook (SMOG) Index, and Flesch-Kincaid Reading Ease (FRE) for readability, and the Patient Education Materials Assessment Tool (PEMAT) for understandability and actionability. Readability was assessed against the Australian recommendation of grade 8 reading level for health information and higher PEMAT scores indicated greater understandability and actionability. Results: The 40 websites reviewed were based in Europe (n = 13), Oceania (n = 12), North America (n = 10), and Asia (n = 4), with one multinational site. Websites generally contained pages on sarcoma definitions, diagnosis, and treatments, but lacked information on supportive and psychosocial care. Readability assessments exceeded (were less readable than) the general population reading level (M = 10.5; SD = 2.0). PEMAT scoring of websites revealed understandability averaging 70.7% (SD = 14.8), but lower actionability (M = 29.1%; SD = 26.4). Conclusions: Limited sarcoma supportive care information exists, with no caregiver-focused websites and little tailoring for specific populations. Websites contained some components to support their readability, such as sub-headings and summaries, but more inclusive and accessible websites are warranted.