Celiac Disease: Helping Consumers Assess Q uality I nformation o n the Internet
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Transcript of Celiac Disease: Helping Consumers Assess Q uality I nformation o n the Internet
Celiac Disease: Helping Consumers Assess Quality Information on the Internet
Kristen K. Conner
OVERVIEWWhat is Celiac Disease?Gluten Intolerance?Food SourcesSymptomsTreatmentResearch PurposeResearch HypothesesFocus Group InterviewsWebsite ReviewsResults
What is Celiac Disease(CD)?
Genetically based autoimmune digestive disease characterized by gluten
intolerance
Celiac Disease: How common is it?
A. 1 in 10,000-15,000
B. 1 in 4,000-5,000
C. 1 in 100-200
D. 1 in 10-20
Gluten Intolerance(GI)
Lesser degree of celiac disease
No harm to intestines
Not genetic
Same symptoms
Much more common!
Why is GI more common?
The Necessary Risk Factors
Gluten Intolerance Celiac DiseaseGrains only Genes AND grains
HLA-DQ2
HLA-DQ8
Grains that Contain Gluten…
*Wheat *Rye *Barley
Celiac Disease: A Clinical Chameleon
Gastrointestinal(typical):Abdominal pain, bloating, gas,
diarrhea, constipation, nausea, vomiting
Celiac Disease: A Clinical Chameleon
Non-Gastrointestinal(atypical):
Musculoskeletal-osteopenia, arthritis
Neurologic-headaches, anxiety, depression
Skin-dermatitis herpetiformis
Liver-inflammation of liver
Blood-iron deficiency anemia
The Celiac Iceberg
Nutritional ComplicationsMalnutritionFertility problemsOsteoporosisThyroid
TREATMENT
Gluten Free Diet ONLY!
Purpose for Research
1. To investigate the internet behavior of individuals with CD or GI and find how they assess the quality of CD websites
2. To systematically evaluate the quality of the most popular CD websites online
Research Hypotheses
1. The studied population assesses the quality of websites on CD and/or GI by their degree of user friendliness instead of transparency
2. The majority of websites reviewed would not have sufficient readability or transparency scores to label them “quality” websites
Research Part 1: Focus Group
1. What information are individuals looking for?
2. Do they use this information in making decisions about their health? What else do they use it for?
3. How do they currently measure a websites quality?
4. Would a tool be utilized by the celiac population to determine quality of websites if developed?
Research Part 1: Focus Group
CSA support group members
Gluten Free San Diego Website
Point Loma Nazarene University students and professors
Website review and survey
Research Part 1: Results Individuals tend to look for: recipes, GF foods to order,
FDA labeling laws, science involved in the gluten-intestine interaction, and hidden sources of gluten
Most individuals use the information they learn online to share with others, find testimonials and blogs of people they can relate to and learn from, and find GF foods and recipes
Individuals often look for current information and evidence based articles on websites that are short, organized, concise, and have useful and practical information
Participants unanimously agreed that if a tool was developed to differentiate high from low quality CD websites that they would definitely use it
Research Part 2: Website Analysis
1. What are the frequencies of the types of websites being used to gain health information about CD and /or GI?
2. What are the average standard criteria (transparency) scores for each website type?
3. What are the average readability scores for each website type?
Research Part 2: Website Analysis
Criteria sheet developed by CD experts at Wm. K. Warren Med. Research Center at UCSD
100 top websites from 3 main search engines: Google(65%), Yahoo(13.1%), MSN(13.9%)
Rate transparency: authorship, attribution, currency, disclosure
RESEARCH PART 2: WEBSITE TYPES
Academic Posted by university-based or affiliated
institutions
Commerci
al
Posted by for-profit establishments
Governme
nt
Posted by the local, state, department or
national government
Profession
al
Posted by health care professionals [non-
academic]
Nonprofit Posted by not-for-profit agencies or federal, state
or local government agencies.
Research Part 2: ResultsFrequency of Website Types
0
10
20
30
40
50
60
CommercialAcademicGovernmentNon-profitProfessional
Website Type
Fre
qu
en
cy
Research Part 2: ResultsDistribution of the mean standard accuracy criteria scores by website type
0 Commercial
1 Academic
2 Government
3 Non-Profit
4 Professional
Research Part 2: ResultsTop 10 Websites
Website:
Score
:http://www.womentowomen.com/digestionandgihealth/glutenintolerance.aspx
0.874
www.celiac.com 0.832http://www.medicinenet.com/celiac_disease/article.htm
0.789http://www.everydayhealth.com/celiac-disease/index.aspx
0.716http://familydoctor.org/online/famdocen/home/common/digestive/disorders/236.html 0.674http://www.aolhealth.com/conditions/celiac-disease
0.632http://drhyman.com/gluten-what-you-dont-know-might-kill-you-11/
0.632http://www.revolutionhealth.com/conditions/digestive/celiac-disease/index
0.632
http://www.uptodate.com/patients/content/topic.do?topicKey=~YqYcT4UaKCmU5n
0.632
http://celiacdisease.about.com/ 0.632
Research Part 2: Results Mean Readability Scores by Website Type
0
2
4
6
8
10
12
1413.01132112.95714312.2512.021739
10.809091
CommercialAcademicGovernmentNon-profitProfessional
Website Type
Read
ab
ilit
y S
core
(U.S
. G
rad
e L
evel)
SummaryOverall mean for standard accuracy was 0.42
56% of websites scored below the mean
Average Flesh Kinkaid readability score was 12.5
Professional websites had the highest mean accuracy(.455) and lowest readability(10.8)
Consumers tend to look at transparency criteria as well as user friendliness when assessing the quality of CD websites
Questions?