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Addressing Frequently Asked Questions About Bone Cancer on the Internet
Cotterill SJ, Craft AW. On behalf of the Bone Cancer FAQ Editorial Panel.
Med Pediatr oncol, 1999, 33(3) 254 (Abstract)
Increasingly the Internet is being used by patients and parents as a supplementary source of information about cancer. However, the quality of information can vary and misinterpretation of technical information can
be a problem. Therefore, an international panel of bone sarcoma experts was convened to answer some of the Frequently Asked Questions (FAQ) about bone cancer and publish this on the Internet. The aim is to provide
authoritative generic answers in language suitable for an international lay audience and to address both basic and complex questions where appropriate. The first version of the FAQ containing 36 answers to 8 general
and 28 disease-specific questions was posted on the Internet (www.cancerindex.org/ccw/faq) and announced to cancer Email lists and news groups. An on-line
questionnaire was included to evaluate the FAQ and to provide demographic information about those using the service. In addition, facilities for feedback and suggesting new questions were included. There were 476
visitors to the FAQ web site over the first 14 days, 58 individuals completed the on-line questionnaire, 6 suggested new questions, and 3 sent other feedback. Of respondents to the self-reporting questionnaire 60%
were female, the age distribution was under 16 yrs (5%), 16-19 (9%), 20-29 (14%), 30-39 (17%), 40-49 (38%) and 50 or older (17%). Respondents classed themselves as parents of a child affected by cancer (29%),
relatives, spouse or friends (32%), cancer patients (18%), survivors of cancer (7%), health professionals / researchers (9%), others (5%). Overall users were most interested in Ewing's sarcoma (28%),
Osteosarcoma (23%), chondrosarcoma (13%), MFH (5%) and all types of bone cancer (31%). Responders assessed various aspects of the FAQ, overall they found it useful (65%), undecided (25%) and not useful (10%). The
nature of the media facilitates rapid feedback from a wide audience and allows continuous evaluation and development of the FAQ. SIOP could take a lead in developing authoritative FAQ answers for other types
of childhood cancer.
This was presented at SIOP/ASPHO, Montreal, 1999 (poster).
Note: the old URL (www.ncl.ac.uk/child-health/guides/faq) appeared in the original abstract.
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