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APPENDIX B. PATIENT RESOURCES

Overview

Official agencies, as well as federally funded institutions supported by national grants, frequently publish a variety of guidelines written with the patient in mind. These are typically called “Fact Sheets” or “Guidelines.” They can take the form of a brochure, information kit, pamphlet, or flyer. Often they are only a few pages in length. Since new guidelines on diabetic retinopathy can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internetbased services that post them.

Patient Guideline Sources

The remainder of this chapter directs you to sources which either publish or can help you find additional guidelines on topics related to diabetic retinopathy. Due to space limitations, these sources are listed in a concise manner. Do not hesitate to consult the following sources by either using the Internet hyperlink provided, or, in cases where the contact information is provided, contacting the publisher or author directly.

The National Institutes of Health

The NIH gateway to patients is located at http://health.nih.gov/. From this site, you can search across various sources and institutes, a number of which are summarized below.

Topic Pages: MEDLINEplus

The National Library of Medicine has created a vast and patient-oriented healthcare information portal called MEDLINEplus. Within this Internet-based system are “health topic pages” which list links to available materials relevant to diabetic retinopathy. To access this system, log on to http://www.nlm.nih.gov/medlineplus/healthtopics.html. From there you can either search using the alphabetical index or browse by broad topic areas. Recently, MEDLINEplus listed the following when searched for “diabetic retinopathy”:

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Diabetes http://www.nlm.nih.gov/medlineplus/diabetes.html

Diabetic Diet http://www.nlm.nih.gov/medlineplus/diabeticdiet.html

Diabetic Eye Problems http://www.nlm.nih.gov/medlineplus/diabeticeyeproblems.html

Diabetic Kidney Problems http://www.nlm.nih.gov/medlineplus/diabetickidneyproblems.html

Diabetic Nerve Problems http://www.nlm.nih.gov/medlineplus/diabeticnerveproblems.html

Eye Diseases http://www.nlm.nih.gov/medlineplus/eyediseases.html

Juvenile Diabetes http://www.nlm.nih.gov/medlineplus/juvenilediabetes.html

You may also choose to use the search utility provided by MEDLINEplus at the following Web address: http://www.nlm.nih.gov/medlineplus/. Simply type a keyword into the search box and click “Search.” This utility is similar to the NIH search utility, with the exception that it only includes materials that are linked within the MEDLINEplus system (mostly patient-oriented information). It also has the disadvantage of generating unstructured results. We recommend, therefore, that you use this method only if you have a very targeted search.

The Combined Health Information Database (CHID)

CHID Online is a reference tool that maintains a database directory of thousands of journal articles and patient education guidelines on diabetic retinopathy. CHID offers summaries that describe the guidelines available, including contact information and pricing. CHID’s general Web site is http://chid.nih.gov/. To search this database, go to http://chid.nih.gov/detail/detail.html. In particular, you can use the advanced search options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive:

•Understanding Diabetic Retinopathy

Source: Yardley, PA: The StayWell Company: KRAMES Health and Safety Education. 2002. 16 p.

Contact: StayWell Company: KRAMES Health and Safety Education. 780 Township Line Road, Yardley, PA 19067. (800) 333-3032. Fax: (866) 722-4377. E-mail: info@krames.com. Website: www.staywell.com. PRICE: Single copy free; $1.95 each. Item number: 11319.

Summary: Diabetes damages blood vessels in the back of the eye. This condition is called diabetic retinopathy and can lead to vision loss or blindness. This booklet helps readers with diabetes understand diabetic retinopathy and how to prevent it or reduce its impact. Topics include eye anatomy, diabetes and the eye, how vision can change, managing one's health (including good blood glucose control), using the Amsler Grid (which helps readers track any changes in their vision), eye evaluation and monitoring (including the role of regular eye exams and what to expect during an eye exam), having

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laser treatments, having vitrectomy, and the importance of working in tandem with one's health care team. The brochure is illustrated with full-color drawings of patients and health care providers as well as anatomical drawings of the eye. The brochure concludes with the contact information for four resource organizations that can provide assistance. 31 figures.

•Diabetic Retinopathy: Information for Patients

Source: Bethesda, MD: National Eye Institute, National Institutes of Health. 1995. 19 p.

Contact: Available from National Eye Health Education Program. 2020 Vision Place, Bethesda, MD 20892-3655. (800) 869-2020 or (301) 496-5248. E-mail: 2020@b31.nei.nih.gov. Single copy free; bulk copies available.

Summary: This brochure helps people with diabetic retinopathy and their families better understand the disease. The brochure describes the cause, symptoms, diagnosis, and treatment of diabetic retinopathy. Topics include the physiology of the retina and how diabetic retinopathy damages the retina; risk factors for this disease; diagnostic testing, including the visual acuity test, pupil dilation, ophthalmoscopy, tonometry, and fluorescein angiography; treatment options, including laser surgery and vitrectomy; current research projects in this area; and recommendations for protecting one's vision. The brochure concludes with a list of resource organizations through which readers may get more information. The back pocket of the brochure includes a flyer providing suggestions for patients about talking and working with their health care providers.

•Ophthalmoscopic Manifestations of Diabetic Retinopathy

Source: Princeton, NJ: Novo Nordisk Pharmaceuticals Inc. September 1991. 7 p.

Contact: Available from Novo Nordisk Pharmaceuticals Inc. 100 Overlook Center, Suite 200, Princeton, NJ 08540-7810. (800) 727-6500. PRICE: Single copy free. Order number 000-33R.

Summary: This brochure presents photographs depicting progressive stages of diabetic retinopathy. A brief outline of the classification system used for nonproliferative and for proliferative diabetic retinopathy is included. The brochure stresses that physicians alert to the opthalmic manifestations of diabetic retinopathy can identify retinal abnormalities at an early stage when prevention of more serious diabetic eye disease is possible. The brochure concludes with a brief glossary.

•Diabetic Retinopathy

Source: San Bruno, CA: Krames Communications. 1997. 4 p.

Contact: Available from Krames Communications. Order Department, 1100 Grundy Lane, San Bruno, CA 94066. (800) 333-3032. Fax (415) 244-4512. PRICE: $17.95 for package of 50 brochures.

Summary: This brochure provides information about diabetic retinopathy. The brochure points out that controlling diabetes and other risk factors may prevent or limit retinopathy. People should watch their diets, get regular exercise, take medicines as prescribed, and check blood glucose levels as often as their health care professionals suggest. Topics include the causes and symptoms of diabetic retinopathy, regular eye exams, controlling diabetes and other risk factors, monitoring vision, and types of treatment. Because people can have diabetic retinopathy without knowing it, regular

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eye exams are especially important. The brochure includes colorful illustrations of people, a healthy eye, and an eye with retinopathy. (AA-M).

•Treating Diabetic Retinopathy: Setting Your Sights on Saving Your Vision

Source: San Bruno, CA: StayWell Company. 2000. 15 p.

Contact: Available from StayWell Company. Order Department, 1100 Grundy Lane, San Bruno, CA 94066-9821. (800) 333-3032. Fax (650) 244-4512. E-mail: email@staywell.com. Website: www.staywell.com. PRICE: $1.75 plus shipping and handling; bulk copies available.

Summary: This illustrated booklet provides people who have diabetes with information on preventing and treating diabetic retinopathy. This complication of diabetes may start without symptoms and worsen over time. In people who have retinopathy, the blood vessels in the eye may go through a series of changes, including the leakage or closure of capillaries or the growth of weak new capillaries. Types of diabetic retinopathy include nonproliferative and proliferative diabetic retinopathy. People who have nonproliferative retinopathy may have capillary leakage, capillary closure, or both. In proliferative retinopathy, new, but weak, blood vessels grow and burst. Regular eye examinations are important to monitor and catch any eye problems before vision damage occurs. During an eye evaluation, the doctor will obtain a medical history, measure vision with an eye chart or other special tools, and perform other diagnostic tests. Managing diabetes by controlling blood glucose levels and blood pressure, eating healthy meals, and exercising may slow the progress of diabetic retinopathy. If diabetic retinopathy does develop, one treatment option is laser surgery to reduce swelling, destroy closed blood vessels, seal weak vessels, and reduce or stop the growth of new blood vessels. In addition, removal of the vitreous may be needed if bleeding into the vitreous has occurred.

•Diabetic Retinopathy: Healthy Eyes Mean a Better Life

Source: St. Louis, MO: American Optometric Association. 1991. 2 p.

Contact: Available from American Optometric Association. Order Department, 243 North Lindbergh Boulevard, St. Louis, MO 63141. (314) 991-4100. PRICE: Single copy free (bulk prices available). Order Number FS6.

Summary: This patient education fact sheet provides information about diabetic retinopathy. As this disease can cause blindness, early diagnosis and treatment is essential. The fact sheet describes the beginning stages of diabetic retinopathy, how the disease progresses, and the types of treatment used to reduce the progression of this eye disease and decrease the risk of vision loss. The fact sheet concludes with a list of recommended steps to take to help prevent diabetic retinopathy.

The NIH Search Utility

The NIH search utility allows you to search for documents on over 100 selected Web sites that comprise the NIH-WEB-SPACE. Each of these servers is “crawled” and indexed on an ongoing basis. Your search will produce a list of various documents, all of which will relate in some way to diabetic retinopathy. The drawbacks of this approach are that the information is not organized by theme and that the references are often a mix of information for professionals and patients. Nevertheless, a large number of the listed Web sites provide useful background information. We can only recommend this route, therefore, for relatively