- Email: [email protected]
Website Review
246
PRINT AND DIGITAL MEDIA REVIEWS
Bottom Line: The overall opinion of this book can only be positive. It is of certain utility for all specialists who are committed to the treatment of these diseases, at times very difficult. Trainees and endoscopists who do not work in referral centers would find useful information. Even experienced endoscopists will find this book interesting and stimulating, in that it points out the limits that these devices have in the treatment in special clinical situations. It will allow the problem to be seen from a different angle and, may be, help to develop new ideas. MASSIMO CONIO Department of Gastroenterology General Hospital Sanremo, Italy Website Review: On Patient-Oriented Internet Content on Celiac Sprue found on websites Celiac Sprue Association, eMedicineHealth, MedicineNet, Celiac.com, WebMD, Right Diagnosis, and Celiac Disease Foundation Celiac disease (CD) and gluten-free diets are gaining popularity in the news and on social media sites. As patients and family members are striving to increase their understanding of this and how to live gluten free, they are turning to popular websites to further educate themselves. This review highlights the strengths and weaknesses of a number of popular websites addressing CD, which were selected on the basis of web hits. We excluded governmental and academic websites.
Celiac Sprue Association (www.csaceliacs.info) The Celiac Sprue Association (CSA) is a nonprofit organization whose website (csaceliacs.info) is all encompassing for the patient or family member who enjoys the details. The pathophysiology and testing information may be more technical than what the average patient may understand, namely, human leukocyte antigen (HLA) molecules, 33-MER stimulating T cells, and sensitivity and specificity of different serologies. This site provides a number of helpful resources including the CSA glutenfree product listing, gluten-free recipes, how to render old recipes gluten-free, and resources for children, as well as survey and clinical study opportunities. This is definitely a site that celiac patients should be aware of and use as it fits their needs, although it may be overwhelming for some people given the amount of information and level of detail.
Emedicinehealth.com (http://www. emedicinehealth.com/script/main/srchcont_ em.asp?searchwhatⴝ1&srcⴝceliacⴙsprue) This site assumes little to no medical knowledge and includes hyperlinks to definitions for terms such as genetic testing, villi, malnutrition, and potassium. The content aims to provide a sufficient overview of the
GASTROENTEROLOGY Vol. 144, No. 1
disease, diagnosis, treatments, and complications of untreated CD, without being overly technical. The website is oversaturated with numerous advertisements and sponsors on either side of the text. Some readers may find this visually distracting. A number of resources are provided for patients seeking further information and support.
MedicineNet (http://search.medicinenet. com/search/search_results/default.aspx? Searchwhatⴝ1&queryⴝceliacⴙsprue) This website (medicinenet.com) uses non-intimidating medical terminology to provide an overview of the disease, diagnosis, treatment, and complications of CD. It is somewhat more technical than Emedicinehealth.com, as exemplified by its pathophysiology discussion, which includes gliadins and tissue transglutaminase, but it is unlikely to overwhelm most patients. The site also makes it a point to explain the differences between latent celiac, silent celiac, refractory celiac, and collagenous celiac. The content is thorough and seems to be reliable, although references are not explicitly provided. Advertisements play a large role and may detract from the website.
Celiac.com (http://www.celiac.com/) This website was created by a patient after receiving a diagnosis of CD. It contains a lot of information; however, it is written by multiple people, most of whom do not have medical degrees, and the style at times resembles more of a blog with emphasis on social media networking as exemplified by encouraging readers to rate and comment on each of the websites. A number of research articles are summarized on this site; however, the summaries lack scientific appraisal and do not discuss how the results should be applied to patients. Organization is suboptimal and some information is redundant at times. There are numerous advertisements and links to purchase items from the “Gluten Free Mall.”
WebMD (http://www.webmd.com/search/ search_results/default.aspx?queryⴝceliac %20sprue) WebMD (webmd.com) offers a very basic and nonthreatening approach to explaining CD, symptoms, treatment, and complications. No science or medical background is needed to comprehend this website. Links to helpful resources are provided. Like MedicineNet and Emedicinehealth.com, there are many advertisements.
Right Diagnosis (http://www.rightdiagnosis. com/searchresult.htm?cxⴝpartner-pub0299288356258400%3Axykg0e-1wiz&cofⴝ FORID%3A11&ieⴝISO-8859-1&qⴝceliacⴙ sprue&siteurlⴝhttp%3A%2F%2Fwww. rightdiagnosis.com%2F) Right Diagnosis (rightdiagnosis.com) provides a basic, nonintimidating approach to discussing CD; how-
January 2013
PRINT AND DIGITAL MEDIA REVIEWS
ever, its layout is confusing (nonlinear, redundant in some sections, non-logical order of discussion, multiple advertisements mixed in with the main content). At times, the site relies on lists without sufficient explanation, such as listing cyclosporin, Imuran, and Remicade as possible treatments for CD, but not indicating when these medications would be considered. Some information is misleading and suggests that there are types of CD, making reference to type I diabetes mellitus–related CD as curable, whereas other areas suggest that there are 13 different types of CD. One link on the main site sends you to another web page titled “Celiac Disease: NIDDK,” which is reasonably easy to follow with a number of high-yield topics that pertain to CD, including a useful chart with advice about following a gluten-free diet.
Celiac.org (http://www.celiac.org/) This website was created by the Celiac Disease Foundation, a nonprofit organization in existence since 1990 that includes a medical advisory board of 24 researchers and clinicians. This site provides a great overview of the disease and treatment; in particular, their testing section clearly and succinctly discusses different serologic tests, need for biopsies, and the role of genetic testing for HLA-DQ2 and -DQ8. Sponsorship is present, but tastefully done so that it does not detract from educational text. Multiple links provide guidance on how to live with CD, addressing issues such as holidays, traveling,
247
listing “celiac experts” by state, and a detailed “What can I eat” section, which delves into specific brands as well as cosmetics, sunscreens, and so on. The Celiac Disease Foundation also places an emphasis on programs geared to help children and young adults with CD, including a celiac summer camp. Overall, it is a very patient-friendly site, providing a good overview of the disease and a strong emphasis on how to live gluten free and various support programs. Bottom Line: There are a number of online resources that patients can use to learn more about CD. Celiac.org and CSA are overall the best resources of those we reviewed to direct patients and their family members to. Celiac.org may be more user friendly in its ability to convey information to patients without requiring a significant medical background. SAMANTHA A. STOVEN Division of Gastroenterology and Hepatology Department of Internal Medicine JOSEPH MURRAY Division of Gastroenterology and Hepatology Department of Internal Medicine and Department of Immunology Mayo Clinic Rochester, Minnesota
REVIEWER RATING Celiac sprue association
Emedicinehealth.com MedicineNet Celiac.com
WebMD
Right diagnosis Celiac.org
Symptom description
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Differential diagnosis
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Testing
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Treatment
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Complications
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Supporting references cited
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Image quality
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Stars: poor; 夝夝: adequate; 夝夝夝: fair; 夝夝夝夝: good; 夝夝夝夝夝: excellent.
PRINT AND DIGITAL MEDIA REVIEWS
Bottom Line: The overall opinion of this book can only be positive. It is of certain utility for all specialists who are committed to the treatment of these diseases, at times very difficult. Trainees and endoscopists who do not work in referral centers would find useful information. Even experienced endoscopists will find this book interesting and stimulating, in that it points out the limits that these devices have in the treatment in special clinical situations. It will allow the problem to be seen from a different angle and, may be, help to develop new ideas. MASSIMO CONIO Department of Gastroenterology General Hospital Sanremo, Italy Website Review: On Patient-Oriented Internet Content on Celiac Sprue found on websites Celiac Sprue Association, eMedicineHealth, MedicineNet, Celiac.com, WebMD, Right Diagnosis, and Celiac Disease Foundation Celiac disease (CD) and gluten-free diets are gaining popularity in the news and on social media sites. As patients and family members are striving to increase their understanding of this and how to live gluten free, they are turning to popular websites to further educate themselves. This review highlights the strengths and weaknesses of a number of popular websites addressing CD, which were selected on the basis of web hits. We excluded governmental and academic websites.
Celiac Sprue Association (www.csaceliacs.info) The Celiac Sprue Association (CSA) is a nonprofit organization whose website (csaceliacs.info) is all encompassing for the patient or family member who enjoys the details. The pathophysiology and testing information may be more technical than what the average patient may understand, namely, human leukocyte antigen (HLA) molecules, 33-MER stimulating T cells, and sensitivity and specificity of different serologies. This site provides a number of helpful resources including the CSA glutenfree product listing, gluten-free recipes, how to render old recipes gluten-free, and resources for children, as well as survey and clinical study opportunities. This is definitely a site that celiac patients should be aware of and use as it fits their needs, although it may be overwhelming for some people given the amount of information and level of detail.
Emedicinehealth.com (http://www. emedicinehealth.com/script/main/srchcont_ em.asp?searchwhatⴝ1&srcⴝceliacⴙsprue) This site assumes little to no medical knowledge and includes hyperlinks to definitions for terms such as genetic testing, villi, malnutrition, and potassium. The content aims to provide a sufficient overview of the
GASTROENTEROLOGY Vol. 144, No. 1
disease, diagnosis, treatments, and complications of untreated CD, without being overly technical. The website is oversaturated with numerous advertisements and sponsors on either side of the text. Some readers may find this visually distracting. A number of resources are provided for patients seeking further information and support.
MedicineNet (http://search.medicinenet. com/search/search_results/default.aspx? Searchwhatⴝ1&queryⴝceliacⴙsprue) This website (medicinenet.com) uses non-intimidating medical terminology to provide an overview of the disease, diagnosis, treatment, and complications of CD. It is somewhat more technical than Emedicinehealth.com, as exemplified by its pathophysiology discussion, which includes gliadins and tissue transglutaminase, but it is unlikely to overwhelm most patients. The site also makes it a point to explain the differences between latent celiac, silent celiac, refractory celiac, and collagenous celiac. The content is thorough and seems to be reliable, although references are not explicitly provided. Advertisements play a large role and may detract from the website.
Celiac.com (http://www.celiac.com/) This website was created by a patient after receiving a diagnosis of CD. It contains a lot of information; however, it is written by multiple people, most of whom do not have medical degrees, and the style at times resembles more of a blog with emphasis on social media networking as exemplified by encouraging readers to rate and comment on each of the websites. A number of research articles are summarized on this site; however, the summaries lack scientific appraisal and do not discuss how the results should be applied to patients. Organization is suboptimal and some information is redundant at times. There are numerous advertisements and links to purchase items from the “Gluten Free Mall.”
WebMD (http://www.webmd.com/search/ search_results/default.aspx?queryⴝceliac %20sprue) WebMD (webmd.com) offers a very basic and nonthreatening approach to explaining CD, symptoms, treatment, and complications. No science or medical background is needed to comprehend this website. Links to helpful resources are provided. Like MedicineNet and Emedicinehealth.com, there are many advertisements.
Right Diagnosis (http://www.rightdiagnosis. com/searchresult.htm?cxⴝpartner-pub0299288356258400%3Axykg0e-1wiz&cofⴝ FORID%3A11&ieⴝISO-8859-1&qⴝceliacⴙ sprue&siteurlⴝhttp%3A%2F%2Fwww. rightdiagnosis.com%2F) Right Diagnosis (rightdiagnosis.com) provides a basic, nonintimidating approach to discussing CD; how-
January 2013
PRINT AND DIGITAL MEDIA REVIEWS
ever, its layout is confusing (nonlinear, redundant in some sections, non-logical order of discussion, multiple advertisements mixed in with the main content). At times, the site relies on lists without sufficient explanation, such as listing cyclosporin, Imuran, and Remicade as possible treatments for CD, but not indicating when these medications would be considered. Some information is misleading and suggests that there are types of CD, making reference to type I diabetes mellitus–related CD as curable, whereas other areas suggest that there are 13 different types of CD. One link on the main site sends you to another web page titled “Celiac Disease: NIDDK,” which is reasonably easy to follow with a number of high-yield topics that pertain to CD, including a useful chart with advice about following a gluten-free diet.
Celiac.org (http://www.celiac.org/) This website was created by the Celiac Disease Foundation, a nonprofit organization in existence since 1990 that includes a medical advisory board of 24 researchers and clinicians. This site provides a great overview of the disease and treatment; in particular, their testing section clearly and succinctly discusses different serologic tests, need for biopsies, and the role of genetic testing for HLA-DQ2 and -DQ8. Sponsorship is present, but tastefully done so that it does not detract from educational text. Multiple links provide guidance on how to live with CD, addressing issues such as holidays, traveling,
247
listing “celiac experts” by state, and a detailed “What can I eat” section, which delves into specific brands as well as cosmetics, sunscreens, and so on. The Celiac Disease Foundation also places an emphasis on programs geared to help children and young adults with CD, including a celiac summer camp. Overall, it is a very patient-friendly site, providing a good overview of the disease and a strong emphasis on how to live gluten free and various support programs. Bottom Line: There are a number of online resources that patients can use to learn more about CD. Celiac.org and CSA are overall the best resources of those we reviewed to direct patients and their family members to. Celiac.org may be more user friendly in its ability to convey information to patients without requiring a significant medical background. SAMANTHA A. STOVEN Division of Gastroenterology and Hepatology Department of Internal Medicine JOSEPH MURRAY Division of Gastroenterology and Hepatology Department of Internal Medicine and Department of Immunology Mayo Clinic Rochester, Minnesota
REVIEWER RATING Celiac sprue association
Emedicinehealth.com MedicineNet Celiac.com
WebMD
Right diagnosis Celiac.org
Symptom description
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夝夝夝夝
夝夝夝夝
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Differential diagnosis
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Testing
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Treatment
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Complications
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Supporting references cited
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Image quality
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Stars: poor; 夝夝: adequate; 夝夝夝: fair; 夝夝夝夝: good; 夝夝夝夝夝: excellent.