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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 macular degeneration can appear at any moment and be published by a number of sources, the best approach to finding guidelines is to systematically scan the Internet-based 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 macular degeneration. 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 macular degeneration. 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 “macular degeneration”:

220 Macular Degeneration

•Guides on macular degeneration

Macular Degeneration

http://www.nlm.nih.gov/medlineplus/maculardegeneration.html

•Other guides

Connective Tissue Disorders http://www.nlm.nih.gov/medlineplus/connectivetissuedisorders.html

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

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

Retinal Disorders http://www.nlm.nih.gov/medlineplus/retinaldisorders.html

Vision Disorders & Blindness http://www.nlm.nih.gov/medlineplus/visiondisordersblindness.html

Within the health topic page dedicated to macular degeneration, the following was listed:

•General/Overviews

Macular Degeneration http://www.nlm.nih.gov/medlineplus/tutorials/maculardegenerationloader.html

What Is Macular Degeneration?

Source: Mayo Foundation for Medical Education and Research http://www.mayoclinic.com/invoke.cfm?id=DS00284

•Diagnosis/Symptoms

Age-Related Macular Degeneration Test

Source: Prevent Blindness America

http://www.preventblindness.org/eye_tests/amd_test.html

•Treatment

Current Treatments

Source: Macular Degeneration Partnership http://amd.convio.net/site/PageServer?pagename=Current_Treatments

•Nutrition

MDP Vitamin Survey

Source: Macular Degeneration Partnership http://amd.convio.net/site/FrameSet?style=User&url=http%253A//209.209.54.83 /vitamintool/index.cfm

Nutrition's Role

Source: Macular Degeneration Partnership http://amd.convio.net/site/PageServer?pagename=Nutrition

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•Coping

Low Vision Aids

Source: Macular Degeneration Partnership http://amd.convio.net/site/PageServer?pagename=Low_Vision_Aids

•Children

Stargardt Disease

Source: Foundation Fighting Blindness

http://www.blindness.org/visiondisorders/causes.asp?type=5

Stargardt's Disease

Source: Mayo Foundation for Medical Education and Research

http://www.mayoclinic.com/invoke.cfm?id=HQ01421

•From the National Institutes of Health

Age-Related Macular Degeneration: What You Should Know

Source: National Eye Institute

http://www.nei.nih.gov/health/maculardegen/armd_facts.htm

Results of the Age-Related Eye Disease Study

Source: National Eye Institute

http://www.nei.nih.gov/amd/summary.htm

•Latest News

Vitamins Combat Age-Related Blindness

Source: 11/10/2003, Reuters Health http://www.nlm.nih.gov//www.nlm.nih.gov/medlineplus/news/fullstory_14601

.html

•Organizations

American Optometric Association

http://www.aoa.org/

Macular Degeneration Partnership

http://amd.convio.net/site/PageServer

National Eye Institute

http://www.nei.nih.gov/

•Pictures/Diagrams

Diagram of the Eye

Source: National Eye Institute

http://www.nei.nih.gov/health/eyediagram/index.htm

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•Prevention/Screening

How Often to Have an Eye Exam

Source: American Academy of Ophthalmology http://www.medem.com/medlb/article_detaillb.cfm?article_ID=ZZZAKCLP3SC& sub_cat=113

What Can I Do About It?

Source: Macular Degeneration Partnership http://amd.convio.net/site/PageServer?pagename=What_Can_I_Do

•Research

Lutein and Eye Disease Prevention

Source: National Eye Institute http://www.nei.nih.gov/news/statements/lutein.htm

Macular Degeneration Treatment Also Effective for Treating Ocular Fungus Disease (Histoplasmosis)

Source: American Academy of Ophthalmology http://www.medem.com/medlb/article_detaillb.cfm?article_ID=ZZZ8WQ30U4D &sub_cat=2

Research and Experimental Treatments

Source: Macular Degeneration Partnership http://amd.convio.net/site/PageServer?pagename=Research

There Is Hope for Those with Age-Related Macular Degeneration

Source: American Academy of Ophthalmology http://www.medem.com/medlb/article_detaillb.cfm?article_ID=ZZZ74AW55CD &sub_cat=2

•Statistics

Vision Problems in the U.S.

Source: National Eye Institute

http://www.nei.nih.gov/eyedata/pdf/VPUS.pdf

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 macular degeneration. 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

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options to look up pamphlets, reports, brochures, and information kits. The following was recently posted in this archive:

•Macular Degeneration: 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 FS8.

Summary: This patient education fact sheet provides information about macular degeneration. This disorder results from changes to the macula, a portion of the retina that is responsible for clear, sharp central vision. The fact sheet notes causes for macular degeneration, the typical symptoms noted as the condition develops, and some of the treatments and low vision aids available to deal with macular degeneration. An early detection chart, used for self-screening, is included on the verso of the fact sheet.

The National Guideline Clearinghouse™

The National Guideline Clearinghouse™ offers hundreds of evidence-based clinical practice guidelines published in the United States and other countries. You can search this site located at http://www.guideline.gov/ by using the keyword “macular degeneration” (or synonyms). The following was recently posted:

•Age-related macular degeneration

Source: American Academy of Ophthalmology - Medical Specialty Society; 1998 September (updated 2001 Oct); 33 pages

http://www.guideline.gov/summary/summary.aspx?doc_id=3088&nbr=2314&a mp;string=macular+AND+degeneration

•Care of the patient with age-related macular degeneration

Source: American Optometric Association - Professional Association; 1994 (reviewed 1999); 47 pages

http://www.guideline.gov/summary/summary.aspx?doc_id=1989&nbr=1215&a mp;string=macular+AND+degeneration

Healthfinder™

Healthfinder™ is sponsored by the U.S. Department of Health and Human Services and offers links to hundreds of other sites that contain healthcare information. This Web site is located at http://www.healthfinder.gov. Again, keyword searches can be used to find guidelines. The following was recently found in this database:

•Age-Related Macular Degeneration: Information for Patients

Summary: This pamphlet is designed to help people with age-related macular degeneration better understand the disease.

Source: National Eye Institute, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&RecordID=689

224 Macular Degeneration

•AMD Newsletter

Summary: A monthly online newsletter for persons afflicted with age-related macular degeneration and their families.

Source: Macular Degeneration Partnership http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&RecordID=4755

•Are You at Risk for Age-Related Macular Degeneration?

Summary: AMD is a common eye disease associated with aging that gradually destroys sharp, central vision.

Source: National Eye Institute, National Institutes of Health http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&RecordID=695

•Eye Disease Information and Resources

Summary: On these pages you will find information about several eye diseases, along with animated depictions of the progression of age-related macular degeneration, cataracts, diabetic retinopathy, dry eye,

Source: Schepens Eye Research Institute http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&RecordID=7737

•Macular Degeneration Help Center

Summary: Links to web sites and resources on health, aging, and low vision, along with information, tools and resources for AMD(age-related macular degeneration) patients, their families and older adults.

Source: Macular Degeneration Partnership http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&RecordID=4600

•Macular Degeneration Research

Summary: This document is about the American Health Assistance Foundation's Macular Degeneration Research program, which was established to fund research on and educate the public about macular degeneration.

Source: American Health Assistance Foundation http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&RecordID=6684

•MD Support

Summary: This site provides information and support for people dealing with macular degeneration and similar diseases of the retina which may lead to central vision loss.

Source: Nonprofit/Professional Entity--Follow the Resource URL for More Information http://www.healthfinder.gov/scripts/recordpass.asp?RecordType=0&RecordID=6686