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?