BUSAN, SOUTH KOREA — With much misinformation online about diabetes, it's important to know which websites and other online portals offer trustworthy information for clinicians and patients with type 1 and type 2 diabetes, says an expert.
Speaking at the recent International Diabetes Federation (IDF) Congress 2019, renowned endocrinologist Irl B. Hirsch, MD, professor of medicine and diabetes treatment and teaching chair at the University of Washington School of Medicine, Seattle, offered the international audience a list of sites he considers reliable and helpful.
He began with the caveat: "I want to preface my comments by saying this is by no means a complete list, but these are some of my favorites."
In an interview with Medscape Medical News, session moderator David M. Maahs, MD, PhD, chief of pediatric endocrinology at Stanford University, La Jolla, California, said it's now pointless to try to tell patients not to look things up online.
"Everyone is going to go on the internet, so point people in the right direction for reliable information," he advised.
For general diabetes information, Hirsch said society websites are a good place for clinicians and patients to start. Among the best of these, he said, are:
JDRF (type 1 diabetes)
Top Type 1 Diabetes Sites
Hirsch pointed out in his talk that he was able to find many more reliable sites for type 1 diabetes than for type 2 diabetes. Among his top picks was the Children with Diabetes (CWD) website. Hirsch called this site "amazing" and "an outstanding site for type 1 diabetes for children, parents, grandparents, and also adults with type 1 diabetes." Its content includes up-to-date information about all aspects of type 1 diabetes research, frequent polls of common questions, and discussion forums.
The site draws about 40,000 visitors per month, the @CWDiabetes handle has 15,000 Twitter followers, and the organization's Facebook page has about 15,000 likes.
"It's not just the United States. People from all over the world are looking at this site," Hirsch noted.
For two decades, the CWD has sponsored the Friends for Life conference, which takes place in Orlando every July. The event is now attended by around 3000 children and young adults with type 1 diabetes and their family members, he noted.
Maahs seconded Hirsch's CWD recommendation. "They've continued to have a wonderful website, a great source of information. The conference is great. They'll put you in touch with people in your area."
Another good type 1 diabetes site for patients and families is that of the JDRF (formerly the Juvenile Diabetes Research Foundation), which provides "an outstanding review of type 1 diabetes research and social action. It's another favorite of mine," Hirsch commented.
In addition to the main site, there are also regional JDRF sites in Australia, the UK, and Canada.
Beyond Type 1 is part of a network that also includes Beyond Type 2 and Spanish-language sites for both Beyond Type 1 and Beyond Type 2. The sites feature news, stories, self-help, and resources.
The International Society for Pediatric and Adolescent Diabetes (ISPAD) has "another wonderful site" for clinicians and families with type 1 diabetes, according to Hirsch. It provides information about events, resources, and guidelines. A recent one, for example, addresses fasting during Ramadan for young people with diabetes.
Maahs, who is secretary-general of ISPAD and edited the organization's 2018 Clinical Practice Consensus Guidelines, noted all of the clinical guidelines and patient education materials are free on the site, as are conference presentations from the past 3 years. A lot of the material is also available in different languages, he emphasized.
Maahs also pointed out that ISPAD's recommendations for pediatric diabetes are mostly in line with those of ADA, but they include far more information — 25 chapters versus just one ADA chapter. Also, in 2018, ISPAD lowered its A1c target for children from 7.5% to 7.0%, which aligns with Scandinavian but not US recommendations.
In addition to the type 1 diabetes sites Hirsch listed, Maahs added the T1D Exchange online community site Glu "a pretty good patient advocacy site," he said.
Best Sites for Type 2 Diabetes Information
Hirsch recommended several sites for patients with type 2 diabetes, including:
The Johns Hopkins Patient Guide to Diabetes, one of Hirsch's favorite type 2 diabetes sites because of its "artistry, the graphics — you get it from just looking at the pictures. There's a tech corner, videos, and patient stories. There's just a lot here for patients."
Diabetes Sisters, specifically for women with diabetes.
Diabetes Strong, which focusses on exercise.
Wildly Fluctuating, "with wildly fluctuating topics from humor to serious stuff to miscellaneous musings on the diabetes news of the week by a type 2 diabetes patient/expert."
Best Sites for Clinicians
For clinicians, Hirsch said the following sites provide free and up-to-date information on the management of type 2 diabetes (some also include type 1 diabetes):
American Association of Clinical Endocrinologists (AACE) Type 2 Diabetes Management Algorithm
UK National Institute for Health and Care Excellence (NICE), which Hirsch called "extensive evidence-based guidelines. They really dig into the evidence as much, if not more, than most of the national standards of care around the world."
Clinical Diabetes , an ADA journal that provides "outstanding articles geared for nonspecialists free to clinicians online 6 months after publication." It includes some primary data articles, but it's mostly review, Hirsch noted.
"Outstanding" Regional Sites
Hirsch also provided information about great regional sites:
Dr Mohan's Diabetes Specialties Centre, "a very good site for those living in India."
HealthDirect in Australia is "another wonderful site for people in that part of the world."
Maahs told Medscape Medical News that, as a pediatric specialist, he isn't as familiar with type 2 diabetes sites, "but if [Hirsch] says they're good there's no reason to think otherwise."
Hirsch is a consultant for Abbott Diabetes Care, Roche, and Bigfoot, conducts research for Medtronic, and is an editor on diabetes for UpToDate. Maahs has received research support from the National Institutes of Health, JDRF, National Science Foundation, and Leona M. and Harry B. Helmsley Charitable Trust, and has consulted for Abbott, Helmsley, Sanofi, Novo Nordisk, Eli Lilly, and Insulet.
International Diabetes Federation Congress 2019. December 3, 2019.
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Cite this: Top Trustworthy Diabetes Advice Online for Docs and Patients - Medscape - Dec 16, 2019.
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