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New Report: The Online Experience of Sarcoma Patients and Supporters
Date:11/1/2013

New York, New York (PRWEB) November 01, 2013

The Liddy Shriver Sarcoma Initiative has published a groundbreaking report on the role of the Internet in the lives of people dealing sarcomas, a diverse set of rare cancers. Bruce Shriver, PhD presented the report on Thursday morning at the 18th Annual Meeting of the Connective Tissue Oncology Society in New York City. Based on the survey responses of 668 people in 30 countries, the report highlights the risks and benefits of using the Internet to learn about these dangerous diseases.

Sarcomas are cancers that affect thousands of people of all ages around the world. Because they are rare, it can be difficult for patients and caregivers to find specialists, accurate medical information, local support groups and other people dealing with the same cancer in their local communities.

The report shows that only 1 in 4 people surveyed had been told about online resources by a doctor. Still, those people searched for information online, and they reported an overwhelmingly positive experience. A full 93% indicated that online information and connections have helped them deal with sarcoma. About 88% reported that the Internet has had a positive effect on their disease knowledge, and a strong majority (74%) also indicated that what they’ve learned online has improved the way that they communicate with and understand their medical teams.

One angiosarcoma survivor wrote about the importance of online resources: “Information is critical to dealing with sarcoma. Doctors tend to have limited time and attention. What patients learn online helps them deal with sarcoma better, helps them ask informed questions and helps them feel less alone. The web works.”

Mary Sorens, designer of the survey, was not surpr
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