Diabetes on the Internet: Resources for Patients

Matthew I. Kim and Paul W. Ladenson

Division of Endocrinology and Metabolism, Department of Medicine, The Johns Hopkins University School of Medicine, Baltimore, Maryland 21287-0003

Address all correspondence and requests for reprints to: Paul W. Ladenson, M.D., Division of Endocrinology and Metabolism, The Johns Hopkins University School of Medicine, 1830 East Monument Street, Suite 333, Baltimore, Maryland 21287-0003. E-mail: . ladenson{at}jhmi.edu

Tracking surveys have reported that more than half of all consumers who visit health care web sites on the Internet are looking for information about specific diseases (1). Diabetes mellitus has been identified as a common topic of interest among health care information seekers. A popular search engine has identified diabetes as one of the most common medical search terms entered by users, second only to cancer in a ranked list of specific disorders (2). This level of interest is reflected in the high visibility of diabetes-related topics on prominent consumer-oriented web sites. Eleven of the 20 most popular health care web sites incorporate direct links to basic information about diabetes on their home pages or primary link pages (3).

Endocrinologists and diabetologists seeking to direct patients to reliable consumer-level information on the Internet may face a daunting task. An enormous quantity of content is dispersed among an ever-increasing number of web sites. By way of demonstration, a wide-ranging search performed in September 2000 using the term diabetes mellitus returned a count of 119,000 indexed pages (4). A similar search performed 1 yr later returned a count of 175,000 indexed pages, representing an increase of 47% over the course of 13 months (5). The challenge of sorting through this expanding array of content is compounded by problems related to the uneven quality of much of this information. Recent studies have raised concerns about the accuracy and organization of disease-specific information on the Internet (6, 7).

We have reviewed a wide array of health care web sites to identify resources that provide access to accurate, relevant, consumer-level information about the diagnosis and treatment of diabetes mellitus. A listing of general resources comprised of organizational web sites and subject indexes is followed by a carefully selected collection of links to web pages that provide detailed information about diabetes-related topics, including diagnostic testing, modes of therapy, and specific complications. Selected links to online consumer-oriented news, support resources, and clinical trial information resources are listed as well. A home page address is provided for each site. Specific subsections are indicated.

To provide easy access to these resources, we have posted a list of links at www.hopkinsmedicine.org/endocrinology/diabetes. This page includes a pdf version of a handout listing the names and URLs of these resources that can be printed for distribution.

Organizations

American Diabetes Association

www.diabetes.org. The American Diabetes Association web site is consistently ranked as one of the most popular disease-specific health care web sites on the Internet. It has been reconfigured from its original format to provide ready access to consumer-level information. Linked pages that provide concise descriptions of the essentials of diagnosis, standard treatments, monitoring, and complications are listed under the headings of Basic Diabetes Information, Type 1 Diabetes, and Type 2 Diabetes. The Type 1 Diabetes section includes a selection of pages that address specific concerns of parents of children and teenagers with diabetes. Pages listed under the heading of Community and Resources provide state-by-state listings of contact information for regional diabetes education programs and support groups. A separate page provides links to updated information about Medicare coverage and health insurance legislation.

National Institute of Diabetes & Digestive & Kidney Diseases (NIDDK): diabetes

www.niddk.nih.gov/health/diabetes/diabetes.htm. The National Institute of Diabetes & Digestive & Kidney Diseases web site provides access to a wide array of NIH publications. The Diabetes section includes a selection of links to online versions of 48 different publications that are cross-referenced as part of the National Diabetes Information Clearinghouse. These publications provide detailed information about the essentials of diagnosis, standard treatments, monitoring, complications, experimental treatments, and alternative therapies. Some of the more comprehensive monographs are complemented by easy-to-read web pages and printable brochures that provide basic practical information about standard treatments, monitoring, and measures to prevent complications. Spanish language and Asian language versions of selected publications are accessible through direct links and through a separate web site maintained by the National Diabetes Education Program. The NIDDK web site also provides access to updated statistical and demographic information about the incidence, prevalence, and economic impact of diabetes.

Joslin Diabetes Center

www.joslin.harvard.edu. The web site hosted by the Joslin Diabetes Center provides access to an extensive Diabetes Library that lists a full range of topics organized under different subject headings. Each topic is outlined and addressed in a concise question-and-answer format. A separate Beginner’s Guide to Diabetes incorporates a subset of topics that deal with some of the immediate concerns of individuals who have recently been diagnosed with diabetes. A recently added feature allows registered participants to enroll in online classes that provide information about the pathophysiology and treatment of diabetes. This site also provides detailed information about clinical services that are available through the Joslin’s central clinic and national satellite programs located in 11 states.

Subject Guides

The Diabetes Monitor

www.diabetesmonitor.com. The Diabetes Monitor web site provides a comprehensive index of links to a wide range of reliable resources drawn from selected institutional web sites, commercial web sites, personal web sites, and online publications. It is divided into six principal sections. The Diabetes Registry is an organized list of web pages that provide detailed information about specific topics. It is divided into subsections listed under the headings of General Topics, Types of Diabetes, Complications, Coping, Management, Medications, Monitoring, and Research. Source information is provided for each web page. The links are monitored and updated on a regular basis. Special symbols are used to identify web pages intended for parents of children with diabetes. The Online Diabetes Resources section provides listings of links to specific Internet resources, accompanied by brief descriptions of their organization, content, and relevance. One list provides an extensive inventory of mailing lists, newsgroups, and discussion boards that deal with diabetes issues. Another list provides descriptions and reviews of diabetes-related periodicals, publications, and specific articles from the scientific and popular literature. There are also lists of personal web sites that provide information about diabetes, and a separate list of web sites that provide information in other languages including Spanish, French, Italian, German, Swedish, Russian, Portuguese, Dutch, Hebrew, Hindi, Japanese, and Korean. Other lists provide links to drug and equipment manufacturer web sites along with descriptions and reviews of diabetes management software. The Diabetes 123 section provides access to a knowledge base of over 8000 specific questions about diabetes that have been reviewed and answered by a team of specialists. Each question is indexed by subject and date. Other sections include a link to the Children with Diabetes online community and an Online Diabetes Dictionary.

Diabetes Portal: Diabetes Living

www.diabetesliving.com. The Diabetes Living web site is a subject guide, maintained by DiabetesPortal.com, that provides an intuitive interface that is easy to navigate. It provides an index of links to a wide range of high-quality resources drawn from selected institutional web sites, commercial web sites, and online publications. This site is divided into six general subsections listed under the headings of Basics, Diabetes Management, Parenting & Children, Complications, Coping, and What’s New. Source information is provided for each link.

New York Online Access to Health: Ask NOAH About: diabetes

www.noah-health.org/english/illness/diabetes/diabetes.html. This web site is one of a series of 48 disease-specific subject guides developed and maintained by the New York Online Access to Health project. It provides an extensive index of links to reliable web pages about specific topics. This site is divided into subsections listed under the headings of What is Diabetes?, Care and Treatment, Complications and Related Concerns, and Information Resources. The links are monitored and updated on a regular basis. Special symbols are used to identify web pages designated for children with diabetes.

Karolinska Institute: diseases, disorders, and related topics—endocrine diseases

www.mic.ki.se/Diseases/c19.html. This web site was developed by the Karolinska Institute as one of the first comprehensive medical subject guides on the Internet. Its organization is based on the National Library of Medicine’s Medical Subject Heading (MeSH) disease classifications. Separate pages of listings are maintained for each of 24 major disease classifications. Each page provides a list of MeSH classifications with cited links to web sites listed under each division. An alphabetical list of diseases can be used to match specific disorders to their appropriate MeSH classifications. Most of the diabetes links are listed on the pages devoted to Endocrine Diseases and Nutritional and Metabolic Diseases.

Topics

The web pages listed below provide detailed consumer-level information about a range of different topics related to the diagnosis and treatment of diabetes. These resources were selected through a process of systematic review that sought to identify concisely written summaries clarifying complicated issues and underlying concepts. They range in content from general overviews of broad topics to inventories of specific recommendations concerning the management of specific problems. Most of these pages include understandable explanations of medical terms with clearly stated answers to common questions. By providing a foundation of basic information, they may serve as reference points for further exploration of specific topics.

Diagnosis

Diabetes Portal: Diabetes Living: Basics: What is Diabetes Mellitus? www.diabetesliving.com/basics/diamel.htm.
This page provides a concise explanation of the essential pathophysiology of type 1 and type 2 diabetes mellitus.

American Diabetes Association: diagnosis and laboratory tests www.diabetes.org/main/application/commercewf?origin=*.jsp&event=link(C4 1).
This page outlines the different laboratory tests that may be used to diagnose diabetes mellitus. An introductory section explains the difference between blood tests used to detect hyperglycemia and urine tests used to detect glucosuria, providing basic guidelines for the interpretation of results. This page also includes descriptive information about glycated hemoglobin testing.

Diet and exercise

NIDDK: Diabetes Nutrition Series www.niddk.nih.gov/health/diabetes/pubs/nutritn/index.htm.
This page lists a selection of links to online versions of booklets that provide basic information about food selection, serving sizes, and the timing of meals and snacks. Each booklet present dietary modification guidelines in a straightforward question-and-answer format, supplemented by clear illustrations and diagrams. Spanish language versions are also available. Full color pdf versions of these booklets can be downloaded for printing.

Diabetic Gourmet Magazine www.diabeticgourmet.com.
This web site provides access to an online version of Diabetic Gourmet Magazine that features a collection of articles dealing with issues related to food selection and preparation. A searchable Diabetic Recipe Archive provides free access to an extensive selection of approved recipes indexed by course, ingredients, and preparation times. Nutritional information and diabetic exchange estimates are listed for each recipe.

American Diabetes Association: exercise and diabetes www.diabetes.org/main/health/exercise/exercise.jsp.
This page provides a basic overview of the benefits of exercise with specific recommendations regarding the recognition, treatment, and prevention of episodes of exercise-induced hypoglycemia.

Medications

American Diabetes Association: diabetes self-testing www.diabetes.org / main / type2 / medical / blood_sugar / default2.jsp.
This page provides general information about self-monitoring of blood glucose. It outlines the essential steps involved in selecting a blood glucose meter, learning to test accurately, logging results, troubleshooting, and testing for ketonuria.

Joslin Diabetes Center: Beginner’s Guide to Diabetes www.joslin.harvard.edu/education/beginnerguide.shtml.
This resource includes a selection of links to pages that provide detailed patient-oriented information about currently available oral agents and insulin analog preparations. Each page presents information in a concise question-and-answer format that explains indications for use, contraindications, mechanisms of action, means of administration, potential drug interactions, and possible side effects.

Canadian Diabetes Association: Insulin: Things You Should Know www.diabetes.ca/Section_About/insulin.asp.
This page provides access to a full color pdf version of a booklet published by the Canadian Diabetes Association that combines descriptive text with clearly illustrated instructions that guide patients through the steps involved in drawing up and injecting single and mixed doses of insulin. Brief descriptions of different types of available syringes, pens, jet injectors, and pumps are included.

Children with Diabetes: insulin pumps

www.childrenwithdiabetes.com/d_06_f00.htm. This page combines a description of the rationale and mechanics of continuous sc insulin infusion therapy with balanced arguments for and against the use of insulin pumps in different circumstances. It includes a selection of links to pump manufacturer web sites, a list of recommended books, links to personal web sites of insulin pump advocates, and other informational resources.

Complications

American Diabetes Association: hypoglycemia www.diabetes.org/main/application/commercewf?origin=*.jsp&event=link(C4_5).
This page provides basic information about hypoglycemia with description of characteristic symptoms and recommendations for self-management of mild to moderate episodes.

American Diabetes Association: ketoacidosis www.diabetes.org/main/application/commercewf?origin=*.jsp&event=link(C4_7).
This page provides information about diabetic ketoacidosis with explanations of possible causes, descriptions of characteristic symptoms and signs, and guidelines for urine testing to detect ketonuria.

National Eye Institute: Facts About Diabetic Retinopathy www.nei.nih.gov/health/diabetic/retinopathy.htm.
This page provides access to an online version of a brochure published by the National Eye Institute. Specific sections focus on the pathophysiology, classification, symptoms, and evaluation of different forms of diabetic retinopathy. Treatment options including laser photocoagulation and vitrectomy surgery are described in detail.

NIDDK: Diabetes—Keep Your Kidneys Healthy www.niddk.nih.gov/health/diabetes/pubs/complications/kidneys/ kidneys.htm.
This page provides basic information about the pathophysiology, symptoms, evaluation, prevention, and treatment of diabetic nephropathy.

NIDDK: Diabetic Neuropathy—The Nerve Damage of Diabetes

www.niddk.nih.gov/health/diabetes/pubs/neuro/neuro.htm. This page provides basic information about the pathophysiology, classification, symptoms, evaluation, and treatment of diabetic neuropathy.

Diabetes Resource Center: Prevent Foot Ulcers and Amputations

www.diabetesresource.com. This web site provides access to an online interactive program sponsored by Lilly that outlines basic foot care procedures. Prophylactic measures and self-monitoring protocols are illustrated with clear diagrams.

News

Diabetes Portal: Diabetes Daily News

www.diabetesdailynews.org. The Diabetes Daily News web site is a patient-oriented resource maintained by DiabetesPortal.com. It provides updated listings of a wide range of full text articles drawn from a variety of wire services, national newspapers, and press releases. This site maintains a complete archive of previous articles listed by year and month.

Diabetes News

www.diabetesnews.com/index.html. This web site maintains an updated listing of full text patient-oriented articles focusing on issues related to the standard treatment of diabetes and the management of complications. It includes brief summaries of newsworthy basic research findings and clinical trial reports that provide concise explanations of relevant results.

American Diabetes Association: Information & News

www.diabetes.org/main/application/commercewf?origin=*.jsp&event=link(E1). The Community and Resources section of the ADA web site includes an Information & News subsection that provides access to a number of different patient-oriented resources including a listing of ADA press releases, full text versions of selected articles from Diabetes Forecast, and a categorical subject guide. Patients interested in news updates about diabetes-related topics can register to receive e-mailed Consumer and Advocacy Newsletters from the ADA through an E-Newsletters service.

Support

Diabetes Portal: Diabetes Station

www.diabetesstation.com. The Diabetes Station is an interactive portal sponsored by DiabetesPortal.com. It hosts a series of online chat sessions with experts and specialists discussing a range of topics related to standard and experimental treatments for diabetes and associated complications. Schedules of regular and special topic chat sessions are posted on the site, along with archived transcripts of previous chat sessions. This site also hosts an open forum message board with chronological listings of updated discussion threads.

Joslin Diabetes Center: Joslin Discussion Boards

www.joslin.harvard.edu/managing/discussion.shtml. The Joslin Diabetes Center web site hosts three separate message boards that are moderated by Certified Diabetes Educators, Registered Dietitians, and Clinical Social Workers. Individual discussion threads are posted under topic subheadings that are listed under the general headings of Nutrition, Living with Diabetes, and Living with Diabetes for Teens and Parents Conferences. Discussion threads posted on each message board are interspersed with comments and answers to specific questions posted by designated moderators.

Clinical Trials

ClinicalTrials.gov

www.clinicaltrials.gov. This web site is maintained by the National Library of Medicine at the NIH. It provides updated information about a wide range of clinical trials sponsored by divisions of the NIH, other federal agencies, academic medical institutions, and private research centers. Dedicated search functions can be used to locate clinical trials with entry of geographic and descriptive search terms. Listings for open clinical trials include comprehensive descriptions of protocols, lists of eligibility criteria, contact information, and links to relevant web sites and literature citations. This site also incorporates a general resource section listed under the heading Understanding Clinical Trials that provides detailed information about subject enrollment and participation in an accessible question-and-answer format.

CenterWatch: Clinical Trials—Diabetes Mellitus Types I and II

www.centerwatch.com/patient/studies/cat55.html. CenterWatch is an information service company that compiles updated information about a wide range of Institutional Review Board-approved clinical trials sponsored by private research centers and academic medical institutions. Its web site provides an alphabetical geographic listing of open clinical trials with entries that include descriptions of protocols, lists of eligibility criteria, contact information, and links to separate Profile Pages that provide descriptive information about private research centers. Patients who are interested in participating can sign up with a Patient Notification Service that provides e-mail updates about the status of new and ongoing clinical trials. A separate Trial Matching and Placement Service sponsored by HealthExchange.org allows patients to create customizable personal home pages that incorporate updated listings of open clinical trials.

Acknowledgments

Received March 21, 2002.

Accepted May 6, 2002.

References

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  2. The Lycos 50 Daily Report 1999 Available at http://50.lycos.com/101299.html. Last accessed 11/00.
  3. Media Metrix Top 10 Health sites, Jupiter Media Metrix 2001 Available at http://www.jmm.com/xp/jmm/services/industries/health.xml. Last accessed 11/01
  4. Google Search using "diabetes mellitus." http://www.google.com. Performed 9/21/00
  5. Google Search using "diabetes mellitus." http://www.google.com. Performed 11/13/01
  6. Berland GK, Elliott MN, Morales LS, Algazy JI, Kravitz RL, Broder MS, Kanouse DE, Munoz JA, Puyol JA, Lara M, Watkins KE, Yang H, McGlynn EA 2001 Health information on the Internet: accessibility, quality, and readability in English and Spanish. JAMA 285:2612–2621[Abstract/Free Full Text]
  7. Coburn S 2000 Turning a medical mountain into a manageable molehill. New York Times, June 25, sect 15, p 10, col 1




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