The National Heart, Lung, and Blood Institute (NHLBI) offers two major categories of information related to COPD: one for patients and the public and the other for health professionals. Located at http://www.nhlbi.nih.gov/health/public/lung/index.htm#copd, the site provides consumer information documents that include COPD, a COPD Data Fact Sheet, and information about the National Emphysema Treatment Trial (NETT). COPD provides consumer-friendly details about the disease; its causes, risks, signs and symptoms; treatment options; and day-to-day management strategies. The section on "How the Lung Works" provides a diagram that can be used for patient teaching. The COPD Data Fact Sheet, in a portable document format (pdf), includes general information about the disease, the prevalence, emergency treatments and hospitalizations, mortality statistics, and associated healthcare costs. The NETT fact sheet presents the collaborative efforts of several federal agencies collaborating in multicenter clinical trials to determine the effectiveness of bilateral lung volume reduction surgery for treating emphysema and to determine the criteria for identifying persons most likely to benefit from the surgery.
Healthcare professionals will not be disappointed when visiting the complementary link http://www.nhlbi.nih.gov/health/prof/lung/index.htm, which features information more specific to healthcare professionals. Publications include the NHLBI COPD Clinical Research Needs and Opportunities Workshop Summary, March 2002 and NHLBI COPD: Future Research Directions, Workshop Summary, March 2001. Also available are the COPD Data Fact Sheet and NETT study information, the same information provided in the consumer pdf versions.
American Lung Association
The American Lung Association has a wide range of information related to lung disorders. The "COPD Center" covers four major categories: diagnose, treat, support, and prevent. The diagnose section has fact sheets on Traveling with Oxygen, Spirometry and Other Lung Function Tests, and an opportunity to sign up for the COPD Newsletter. The treat section has the COPD Lung Profiler, an interactive decision support tool, and the COPD Medicines Chart, which has an excellent table on the various drugs used to treat COPD. The support section includes information on the Better Breathers Club, support groups in 37 states that meet regularly to discuss tips and techniques for better disease management, and the Living with Lung Disease message board. The Freedom from Smoking Online anchors the prevent section with a free online smoking-cessation program.
American Thoracic Society
With the American Thoracic Society's mission to fight respiratory disease through research, education, patient care, and advocacy, this Web site has COPD as one of its featured sections. There are four primary COPD areas covered: COPD Home, Management of Stable COPD, Exacerbation, and Patients. This Web site has one of the most thorough discussions of COPD, with special topics such as assisted ventilation, nutrition, end-of-life and palliative care considerations, air travel, and a host of in-depth topics.
American Academy of Family Physicians
The American Academy of Family Physicians' Web site (family-doctor.org) features a wide range of conditions and diseases in easy-to-use, printer friendly, and e-mail available formats. Offered in English and Spanish versions, the COPD topic provides easy-to-read details about the disease, with a simple drawing of the lungs, a great supplement for teaching purposes. It covers the etiology, diagnostic process, treatment, complications, and how to take inhaled medications. If your patient has asthma, a fact sheet on that condition also is available.
Global Initiative for Chronic Obstructive Lung Disease
This Web site, sponsored by medical professionals with worldwide representation, promotes public awareness and prevention strategies for COPD. Global Initiative for Chronic Obstructive Lung Disease (GOLD) disseminates scientific reports, provides education and management tools, publishes research findings, and sponsors international collaboration. The organization also has published easy-to-read clinical documents for the healthcare professional. The Global Initiative for Chronic Obstructive Lung Disease Pocket Guide to Diagnosis, Management and Prevention for Healthcare Professionals (2004) provides an overview of COPD, the diagnostic process, treatment, and management programs, including a section on exacerbations and interpretation of spirometry findings. The GOLD Patient Guide: What You and Your Family Can Do About COPD features an easy-to-read pdf, 20-page booklet that can be used for patient education.
The National Emphysema Foundation
This organization was founded in 1971 with the mission to improve the quality of life for patients with emphysema, asthma, or related-lung diseases with information and education. The National Emphysema Foundation sponsors a Web site discussion board and "E-Community" geared to keeping online contact with those who have COPD. The Pulmonary Health/Normal Lung section contains a wealth of printed information that can be shared with patients about the lungs, breathing retraining, exercises for purse-lipped breathing and expanding the chest, and managing short attacks of shortness of breath. These educational materials are a welcome addition to any home care nurses' educational toolkit.
COPD International
COPD International is a nonprofit volunteer organization whose mission is to provide information and support to persons with COPD, their families, and concerned others.
This consumer-friendly Web site offers specialty online support services for those with COPD, caregivers, teens, and younger children, all of whom are known as the "communities." A chat room is available for online users 24 hours a day. Message boards assist those with COPD get needed help and guidance from others who have the same condition. The Quit Smoking Now program is geared to help individuals kick the habit by providing continuing online support. The Keep in Touch program is geared to the homebound individual living alone and provides help in the form of small groups who form e-mail lists that contact persons on a daily basis. The COPD Survival Guide presents the personal experience of someone confronted with COPD who has learned to live with the disease. COPD is explained in layman's terminology and re-emphasizes many of the aspects of continuing care that home care nurses would use in patient teaching through reinforcement, the explanation of different terminology, and a discussion of issues related to emotional support. Listserves provide ample opportunities to get a variety of newsletters.