© Copyright 2006 by the Society for Neuro-Oncology
Received July 11, 2005
Accepted November 21, 2005
Quality of health information on the Internet in pediatric
neuro-oncology
Darren R. Hargrave 1*,
Ursula A. Hargrave 1,
Eric Bouffet 2
1 Royal Marsden Hospital, Sutton
2 Paediatric Brain Tumour Program, Hospital for Sick
Children, Toronto
* To whom correspondence should be addressed. E-mail: darren.hargrave{at}rmh.nhs.uk.
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Abstract |
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The Internet is now the single largest source of health
information and is used by many patients and their families who are
affected by childhood brain tumors. To assess the quality of pediatric
neuro-oncology information on the Internet, we used search engines to look
for information on five common tumor types (brain stem glioma,
craniopharyngioma, ependymoma, low-grade glioma, and medulloblastoma). The
Web sites were evaluated for content quality by using the validated
DISCERN rating instrument. Breadth of content and its accuracy were also
scored by a checklist tool. Readability statistics were computed on the
highest-rated sites. Of 114 evaluated Web sites, the sources were as
follows: institutional, 46%; commercial, 35%; charitable, 15%; support
group, 2%; and alternative medicine, 2%. Good interobserver correlation
was found for both ratings instruments. The DISCERN tool rated Web sites
as excellent (4%), good (7%), fair (29%), poor (39%), or very poor (21%).
Only 5% of the Web sites provided one or more inaccurate pieces of
information. Web sites were found deficient in topics covering etiology,
late effects, prognosis, and treatment choices. Few sites offered
information in languages other than English, and readability statistics
showed an average required reading level of U.S. grade 12+ (the suggested
level being grades 6-8 for an adult audience). The Internet is
increasingly being used as a source of oncology information for patients
and their families. Health care professionals should be actively involved
in developing high-quality information for use in the next generation of
Web sites.
Key Words:
health information, Internet, neuro-oncology, pediatrics, readability
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