Poster Presentation 2025 Joint Meeting of the COSA ASM and IPOS Congress

Assessing the quality and readability of websites for people with sarcoma and their caregivers: SUN-SHINE sarcoma website review (126427)

Chloe Maxwell-Smith 1 2 3 , Shantelle Smith 1 3 , Lauren Nicholson 1 3 , Moira O'Connor 3 , Jenny Davies 3 , Mandy Basson 4 , Georgia Halkett 3
  1. Behavioural Science and Health Lab Group. Faculty of Health Sciences, Curtin University , Perth, Western Australia
  2. Curtin Medical Research Institute, Faculty of Health Sciences, Curtin University, Perth, Western Australia
  3. Curtin University, Bentley, WA, Australia
  4. Sock it to Sarcoma!, Perth, Western Australia

Purpose:

Sarcoma is a rare type of cancer that typically requires complex, multi-phase treatment. Although oncologists provide essential clinical care, people with sarcoma report unmet psychological and informational needs. This review aims to assess the quality and readability of existing online sarcoma support resources, to guide future resource development under the SUN-SHINE Sarcoma Project.

Methods:

A review was undertaken of websites offering information about sarcoma internationally. Google was used to search key terms, and the top ten results from each search were screened for relevance. From an initial set of 95 websites, 40 were deemed eligible for detailed review. Assessments for quality and readability were undertaken.

 Results:

Among the 40 websites included, most originated from Europe (n=13), Oceania (n=12; including 11 Australian and 1 New Zealand), and North America (n=10). The majority of sites featured content on sarcoma definitions, diagnosis, and treatment pathways, but few addressed supportive care—particularly those run by healthcare facilities. Assessment using the Patient Education Materials Assessment Tool (PEMAT) showed that while understandability was generally sufficient (Mean=70.7; SD=14.8), actionability was poor (Mean=29.1; SD=26.4). Furthermore, readability analyses indicated that most content exceeded the recommended reading level for the general public (Mean grade=10.5; SD=2.0).

Conclusion:

Although some online support resources for people with sarcoma are available, there is a notable lack of information specifically for carers and limited tailoring for vulnerable or at-risk populations. While features such as sub-headings and summaries helped improve readability, there is a clear need for more comprehensive, inclusive, and accessible online resources. We are currently co-designing sarcoma website resources under the SUN-SHINE Sarcoma Project for people with sarcoma and their families to address gaps identified in this review and unmet information needs previously identified in our earlier work.