Breast Cancer and the Internet:What’s Available and What’s Understandable?

Christine Makosky DaleyDepartment of Health and Social

Behavior, Harvard School of Public Health

Department of Anthropology, University of Connecticut

Information Available to Breast Cancer Patients

Popular Books and Magazines Pamphlets Medical Journals (maybe) Internet

Informational Sites Discussion Groups Medical Advice

The Internet Now more

available than ever Home Workplace Public hook-ups

Libraries Cancer Centers Schools

Hagan (1997) provides a list of organizations, publications, and Internet sites available to breast cancer patients

It is still undetermined if the information available is suitable for the group

Is the Material Suitable? Which sites provide the best or most

accurate information about breast cancer, including information on risk, diagnosis and treatment, and the biology of the disease?

Which sites provide the most easily understood information?

Which sites are most easily navigated?

Literacy – the NALS (1993)

21% - 23% of adults in the US demonstrated literacy skills at the lowest levels of prose, document, and quantitative proficiencies

25% - 28% were at the next highest level These two levels account for approximately

½ the adult US population These two levels show an inability to perform

literacy tasks necessary to function in society and meet everyday needs

Ethnic minorities are disproportionately represented in these two levels

Assessments of Cancer Information – Print Information Glazer et al. (1996), Guidry & Fagan (1997),

Meade et al. (1992), Michielutte et al. (1992) Scored between grade 9 and grade 12

American Cancer Society (Meade et al. 1992) Grade 11

All of these materials are above ½ of the population’s literacy level

Internet materials have not yet been addressed

Sites Chosen Ten sites were evaluated using the SAM

(Suitability Assessment of Materials) Meta-search results done in March

2001 US sites based on popularity Sites were designed for patients, but

some also for researchers or health care practitioners

SundayNews.com www.cancernews.com/breast.htm

National Alliance of Breast Cancer Organizations

www.nabco.org

American Cancer Society www.cancer.org

Breast Cancer Answers Project – Berkeley

www.canceranswers.com

Living Beyond Breast Cancer

www.lbbc.org

Breast Cancer Fund www.breastcancerfund.org

Breast Health and Breast Cancer Network

www.cancerhelp.com/ed

University of Wisconsin Comprehensive Cancer Center

www.medsch.wisc.edu/bca

Internet Male Breast Cancer Group

http://interact.withus.com/interact/mbc

Oncolink – University of Pennsylvania

http://oncolink.upenn.edu/disease/breast

Suitability Assessment of Materials (SAM) Content

Purpose is evident Content about behaviors Scope is limited Content Accuracy Summary or review included

Literacy Demand Reading grade level (Fry) Writing style, active voice Vocabulary uses common

words Context is given first Learning aids via “road signs”

Graphics Cover graphic shows purpose Type of graphics Relevance of illustrations Lists, tables, etc. explained Captions used for graphics

Layout and Topography Layout factors Typography Subheadings used Navigation

Learning Stimulation, Motivation

Interaction used Behaviors are modeled and specific Motivation – self-efficacy

Cultural Appropriateness

Match in logic, language, experience Cultural images and examples

Total Possible Points = 48

SAM, continued Doak, Doak, & Root (1996) Modifications:

Cover is considered the home page Content Accuracy

Superior – Information accurate to within a year, includes references to scholarly work

Adequate – Information is accurate to within two years, does not include references

Not suitable – Information is dated (older than two years) or is incorrect

SAM, cont’d Modifications, cont’d

Navigation Superior – Must include the following:

Links from home page to information without going through more than 2 pages

Links in 14 point font or larger and are distinct from the text

Search function FAQ page

Adequate – Includes 2 or 3 of the above Not Suitable – Includes 1 or 0 of the above

SAM Overall Ratings Superior

70% to 100% At least adequate on content accuracy,

literacy, and navigation Adequate

40% to 69% At least adequate on content accuracy,

literacy, and navigation Not Suitable

0% to 39

Site Overall

Content

Literacy

Navigation

SundayNews.com 59.4% 2 0 0

NABCO 56.3% 2 0 1

American Cancer Society

50.0% 2 0 1

Breast Cancer Answers

67.5% 1 0 0

Living Beyond Breast Cancer

64.7% 2 0 0

Breast Cancer Fund 31.8% 1 0 0

Breast Health and Breast Cancer Network

57.5% 1 0 0

University of Wisconsin

69.6% 2 1 1

Male Breast Cancer 41.7% 2 0 1

Oncolink 40.0% 2 0 2

Site Rating Adjusted Rating

SundayNews.com Adequate Not Suitable

NABCO Adequate Not Suitable

American Cancer Society Adequate Not Suitable

Breast Cancer Answers Adequate Not Suitable

Living Beyond Breast Cancer

Adequate Not Suitable

Breast Cancer Fund Not Suitable Not Suitable

Breast Health and Breast Cancer Network

Adequate Not Suitable

University of Wisconsin Adequate Adequate

Male Breast Cancer Adequate Not Suitable

Oncolink Adequate Not Suitable

Site Fry Grade Level

SundayNews.com 15

NABCO 16

American Cancer Society 9

Breast Cancer Answers 12

Living Beyond Breast Cancer 17+

Breast Cancer Fund 12

Breast Health and Breast Cancer Network

10

University of Wisconsin 8

Male Breast Cancer 16

Oncolink 17+

Accuracy of Information All sites provided at least adequate

information based on the criteria used

Seven of 10 sites provided superior information which included references to scholarly work

Based on these sites, breast cancer patients can receive accurate information on the Internet

Easily Understood Information Only one site provided information that

was adequate in terms of reading grade level according to the Fry formula

All other sites were not suitable for the majority of readers, unless we assume that women who use the Internet are at a higher literacy level then those who do not

The biggest problem with all sites in literacy was scientific terms that are not easily understood, bringing grade level up

Ease of Navigation Only one site received a superior rating

for navigation based on the criteria used An additional four sites received

adequate ratings The remaining five sites were not suitable

for navigation Common problems in navigation

included: No search feature No FAQs Embedded links and links in a small font

(really also a literacy issue)

Conclusions Though hundreds to thousands of

breast cancer sites exist, those sites most frequently visited are most often not suitable for the majority of the population

The biggest problems with breast cancer sites revolve around the issue of literacy

Conclusions, cont’d Accurate information that is not easily

understood is useless to the consumer Writing sites at a lower literacy level and

ensuring easy navigation could drastically alter the amount of information women are able to understand from the Internet

Assuming the Internet continues on its present course and is used more and more, sites must be altered to allow women to learn more from their use