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Celiac Disease: Helping Consumers Assess Q uality I nformation o n the Internet

Celiac Disease: Helping Consumers Assess Q uality I nformation o n the Internet. Kristen K. Conner. Overview. What is Celiac Disease? Gluten Intolerance? Food Sources Symptoms Treatment Research Purpose Research Hypotheses Focus Group Interviews Website Reviews Results.

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Celiac Disease: Helping Consumers Assess Q uality I nformation o n the Internet

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  1. Celiac Disease: Helping Consumers Assess Quality Information on the Internet Kristen K. Conner

  2. Overview • What is Celiac Disease? • Gluten Intolerance? • Food Sources • Symptoms • Treatment • Research Purpose • Research Hypotheses • Focus Group Interviews • Website Reviews • Results

  3. What is Celiac Disease(CD)? Genetically based autoimmune digestive disease characterized by gluten intolerance

  4. 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

  5. Gluten Intolerance(GI) • Lesser degree of celiac disease • No harm to intestines • Not genetic • Same symptoms • Much more common!

  6. Why is GI more common?

  7. Gluten Intolerance Celiac Disease • Grains only • Genes AND grains HLA-DQ2 HLA-DQ8 The Necessary Risk Factors

  8. Grains that Contain Gluten… *Wheat *Rye *Barley

  9. Celiac Disease: A Clinical Chameleon • Gastrointestinal(typical): • Abdominal pain, bloating, gas, diarrhea, constipation, nausea, vomiting

  10. 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

  11. The Celiac Iceberg

  12. Nutritional Complications • Malnutrition • Fertility problems • Osteoporosis • Thyroid

  13. Treatment • Gluten Free Diet ONLY!

  14. Purpose for Research • To investigate the internet behavior of individuals with CD or GI and find how they assess the quality of CD websites • To systematically evaluate the quality of the most popular CD websites online

  15. Research Hypotheses • The studied population assesses the quality of websites on CD and/or GI by their degree of user friendliness instead of transparency • The majority of websites reviewed would not have sufficient readability or transparency scores to label them “quality” websites

  16. Research Part 1: Focus Group • What information are individuals looking for? • Do they use this information in making decisions about their health? What else do they use it for? • How do they currently measure a websites quality? • Would a tool be utilized by the celiac population to determine quality of websites if developed?

  17. 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

  18. 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

  19. Research Part 2: Website Analysis • What are the frequencies of the types of websites being used to gain health information about CD and /or GI? • What are the average standard criteria (transparency) scores for each website type? • What are the average readability scores for each website type?

  20. 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

  21. ResearchPART2: WebsiteTypes

  22. Research Part 2: ResultsFrequency of Website Types

  23. Research Part 2: ResultsDistribution of the mean standard accuracy criteria scores by website type

  24. Research Part 2: ResultsTop 10 Websites

  25. Research Part 2: Results Mean Readability Scores by Website Type

  26. Summary • Overall 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

  27. Questions?

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