Chronic Obstructive Pulmonary DiseaseBrian L. Tiep, M.D. Medical Director Respiratory Disease Management Institute City of Hope Cancer Center Duarte, California Introduction
COPD is a major cause of disability and is the fourth leading cause of death in the United States. It is a leading reason for admission and re-admission to the hospital. In spite of this, it is an under-funded area of medicine and research. A majority of the population is not familiar with the term “COPD.” A Google search for “COPD” yields 6,800,000 sites. Emphysema, a term more recognized by the public, brings up 5,040,000 sites. A search for “emphysema COPD” yields 1,070,000 sites. A search for “COPD guidelines and standards” yields 338,000 sites. Thus, some choices are required. The first focus of this review will be on websites from unquestionably credible organizations such as the American Thoracic Society, National Institutes of Health, British Thoracic Society, European Respiratory Society, and the Canadian Respiratory Society. COPD guidelines were specifically designed to provide a resource for professionals on recommendations for the diagnosis and management of the disease based on science and expert opinion. Other websites chosen for this review or listing include sites intended to guide professionals, sites that provide professional advice to patients and sites for patients by other well-informed patients. There are some excellent commercial sites; however, they are not included in this review.
Last Update: July 2007 Search
All of the websites listed in this section are authoritative and represent a major endeavor by a group of recognized experts to consider and distill information into useful and accessible guides. All the guidelines emphasize that COPD is a treatable disease and requires a positive approach to management. These guidelines are well referenced and have downloadable summaries. Each of these sites is authoritative. Best WebsitesGlobal Initiative on Obstructive Lung Disease (GOLD)GOLD, a collaboration between the National Heart, Lung, and Blood Institute, National Institutes of Health, USA, and the World Health Organization, has a mission to create a set of evidence based guidelines. The GOLD committee is made up of leading experts from many nations around the world. The GOLD Guidelines recommend effective COPD management and prevention strategies. It strives to increase awareness of the medical community, public health officials and the general public that COPD is a public health problem. The objective is to reduce morbidity and mortality from COPD through implementation and evaluation of effective programs for diagnosis and management. Authority: This website, a collaboration between the National Heart, Lung, and Blood Institute, National Institutes of Health, and the World Health Organization, has representation from experts in 49 countries. Rating: 5 Currency: This site was launched in 1997; it has regular updates. The most recent updates were in November 2006. It is definitely a work in progress and reflects the latest developments in the field. Rating: 5 Accuracy: GOLD is an evidence-based review combined with expert opinion. It is fully referenced. Rating: 5 Navigation & Readability: The site is easily searched. Navigation from home page directs to guidelines, pocket guides and patient sites including instructions in such areas as the use of inhalers. The guidelines are in the form of downloadable PDF files with limited internal navigability However the website itself is very navigable. Rating: 5 Utility: The GOLD documents provide excellent tables, diagrams and algorithms. The material is free of charge. The GOLD Workshop Report is supported through unrestricted educational grants from several pharmaceutical and manufacturing companies. All materials are downloadable and printable. In its advocacy, it provides updates on activities related to COPD with references for individual countries. It is truly designed to educate the public as well as professionals about this devastating disease. It has an excellent patient guide. Unfortunately oxygen, rehabilitation, and disease management are not emphasized. (It is noted that some countries lack access to some of these modalities) Rating: 5
Summary: This site is comprehensive and represents a truly global approach to the totality of the subject. Internal navigation with search engines would help the busy professional realize even greater benefit. The GOLD is presented first because it is referenced by all other guidelines included in this review. American Thoracic Society - European Respiratory Society: Standards for Diagnosis and Management of Patients with COPDThis is a combined effort of both societies to create a web-based “live modular” document that emphasizes some of the issues important to U.S. and European audiences. It takes full advantage of the navigational features of the web and recognizes the contributions of GOLD. This set of guidelines is accessible from both the ATS and ERS websites with minor differences in presentation format. Authority: This guideline is sponsored by the American Thoracic Society and European Respiratory Society and was approved by the boards of both societies. It had input from clinicians, researchers, nurses, and respiratory therapists. Some of these individuals also served on GOLD. Input was also gathered from patients living with COPD. Funding for this effort came from an unrestricted educational grant from a pharmaceutical company. Use of the material at this site is free of charge. Rating: 5 Currency: These sites were released in May 2004. Both have been updated as recently as September 2005 although the website formats have been upgraded within the last year. Rating: 4 Accuracy: The material presented is accurate and presented in review format. Rating: 5 Navigation & Readability: ERS: http://www.ersnet.org/lrPresentations/copd/files/main/index.html ATS: http://www-test.thoracic.org/copd/. Both sites are easily navigated with a table of contents on the left side and ability to return to the home page from anywhere in the site. A navigation diagram on the site’s front page describes the disease and its clinical progression. Each icon of the diagram is context sensitive and links to the appropriate location of the web document. Rating: 5 Utility: Both sites make full use of the web with links to appropriate sites and reference materials. Both the patient and professional portions of the document are available as downloadable PDF files. These PDF files can be navigated much the same as the website–even while not connected to the Internet. There is also a very easy-to-understand patient section. The material is free of charge. Rating: 5
Summary: The ATS and ERS Guideline websites build on GOLD and have the advantage of the entire document being web based. They specifically address European and United States issues and include a section on Integrated disease management. These sites are very comprehensive and make full use of HTML and PDF navigability. The PDF documents can be navigated while disconnected from the Internet. Internal navigation will help the busy professional realize even greater benefit. Canadian Thoracic Society COPD GuidelinesThe Canadian Guidelines were designed to meet the specific need of Canadians in the context of their available resources. While recognizing GOLD as exemplary, their panel felt the need to improve upon specific aspects of the GOLD document. They specifically sought to develop a new chronic care model to replace the existing reactive acute care models. Authority: This guideline is sponsored by the Canadian Thoracic Society and various drug companies. It had input from clinicians, researchers, nurses, and respiratory therapists. Rating: 5 Currency: This guideline was released in 2005 and the website has been updated in 2006. Rating: 5 Accuracy: The material presented is accurate and evidence based. Rating: 5 Navigation & Readability: The home page of the guidelines links to multiple, different presentations of the document. There are specific documents for family physicians and the executive summaries, as well as a separate document on the management of exacerbations. There are clearly written PDF documents from the Canadian Respiratory Journal that are downloadable; the table of contents links to the body of the document. Rating: 5 Utility: This is a complete set of documents that are easily accessible from the home page. There are excellent patient resources and free literature as well as free videos available. This guideline has a unique section on collaborative self -management, which is presented prior to pharmacological therapy and separately from pulmonary rehabilitation. There is a very comprehensive section on oxygen therapy particularly in support of exercise training. There are summary points at the end of each section. The material at this site is free of charge. It is presented in both English and French. Rating: 5
Summary: This guideline is very comprehensive and highlights collaborative self-management and pulmonary rehabilitation. There is a unique separate downloadable PDF document for management of exacerbations. National Institute for Clinical Excellence (NICE), United Kingdom: Management of COPD in Adults in Primary and Secondary CareNational Institute for Health and Clinical Excellence (NICE) is an independent organization commissioned by Department of Health of the United Kingdom to create guidelines in important clinical areas including COPD. Guidelines are directed toward primary care physicians to assist in managing patients with serious health conditions. These guidelines are available as PDF files that are downloadable from their website. Authority: This guideline is sponsored by the National Institute for Clinical Excellence. It had input from clinicians, researchers, nurses and respiratory therapists and went through multiple steps to gain approval. Rating: 5 Currency: The site was released in February 2004. Rating: 4 Accuracy: The material presented is accurate with numbered paragraphs. It is evidence based with the evidence ratings located to the right of the text. It is meant to be a practical and referenced guide for the British Health Care System with the disclaimer that clinical judgment should prevail. Rating: 5 Navigation & Readability: The documents are in a PDF format. There are no internal PDF hyperlinks. There are three different versions: NICE Guideline: www.nice.org.uk/CG012niceguideline , Quick Reference Guide: www.nice.org.uk/CG012quickrefguide Information for Patients: www.nice.org.uk/CG012publicinfo . In spite of the fact that there is no HTML version, the three versions provide easy accessibility. Rating: 5 Utility: The choices available and rapid downloading enables both a quick guide as well as a comprehensive reference. Both the patient and professional portions of the document are downloadable as easy-to-read PDF files. The material at this site is free of charge. There are sections on self -management and multidisciplinary approach, but no disease management. Rating: 5
Summary: This site is comprehensive. With the easy-to-read reference for patients, it is an excellent guide for professional and their patients. This guideline was included because it is utilized as a standard of care for British Healthcare System. American Thoracic Society/European Respiratory Society Statement on Pulmonary RehabilitationThis is a combined effort of both societies to present evidence based up-to-date information on the benefits and mechanisms of pulmonary rehabilitation. This information is not only valuable for pulmonary rehabilitation but provides the scientific basis for disease management and chronic care as well and thus may extend over the lifetime of the patient. This is a PDF document that can be downloaded to take advantage of PDF formatting. Authority: This guideline has input from leading investigators and clinicians from both societies. Rating: 5 Currency: The site is current having been released in 2006. Rating: 5 Accuracy: The material presented is accurate and evidence based. Rating: 5 Navigation & Readability: This document is in a PDF format. It is logically presented and very readable. However, it could benefit from internal and external links available in PDF formatting. Rating: 4 Utility: This is a great reference guide as well as a comprehensive evidence base. The PDF file may be easily downloaded. It may be bookmarked and with the placement of internal and external links by the experienced PDF file user. The material at this site is free of charge. There are sections on self -management and multidisciplinary approach, but no disease management. Unfortunately this is a document rather than a currently maintained website. Rating: 4
Summary: This document is included because pulmonary rehabilitation is considered to be the standard of care for COPD patients – although few patients in proportion to the total population of COPD patients actually experience it. This website is evidence-based, comprehensive, easy to read, and is an excellent guide for professionals caring for patients with COPD. Alpha-1 AssociationThe Alpha-1 Association is the support group for patients with the genetically inherited form of emphysema/COPD: alpha-1 antitrypsin deficiency. The organization and its associated foundation serve several functions, including support, advocacy and research. Patients and professionals enter this group of websites at http://www.alpha1.org and have a choice of going to Alpha-1 Association, Alpha Net, or Alpha-1 Foundation. Each is clearly explained in the icon and provides a rapid link to the appropriate site. The Alpha-1 Foundation is a member organization of the American Thoracic Society’s Public Advisory Roundtable (PAR). Authority: The website has input from leading investigators in the field. Rating: 5 Currency: This website provides information on the latest research and advocacy activities. Rating: 4 Accuracy: This is accurate and up to date. The organization served as one of the resources for some of the COPD guidelines. Rating: 5 Navigation & Readability: This site has excellent navigation on all pages. The home page is not crowded and easy to read. Patients and caregivers rapidly link to practical content. Rating: 5 Utility: This is easy-to-find information that is interrelated. The reader has the opportunity to identify studies, contribute to research, understand advocacy activities in their behalf or find a local support group. The material is free of charge. Rating: 4
Summary: The site is valuable to both patients and caregivers. Alpha-1 antitrypsin deficiency is not well known by the general public. Alpha-1 is under-considered and under-tested even among specialists. This website helps to describe this important inherited form of emphysema and leads both clinician and patient each step of the way to understand the disease, detect its presence and is a guide to appropriate management. Pulmonary Education and Research Foundation (PERF)PERF is a small foundation devoted to education and research in COPD. Much of this effort is focused on pulmonary rehabilitation. It also has become involved in advocacy on behalf of patients requiring oxygen – especially for travel. The site has excellent linkages to other appropriate organizations. Authority: The website has regular input from leading physicians and researchers in the field of pulmonary physiology and pulmonary rehabilitation. Rating: 5 Currency: This website is constantly updated but keeps its important article links on the front page. Rating: 4 Accuracy: This is accurate and up to date and is often visited. It comes up regularly on Google searches. Rating: 5 Navigation & Readability: This site has excellent navigation. All links are fully described on the link icon. Patients and caregivers rapidly link to well-selected core topics important for understanding the disease and enabling self management. All material is very readable. Rating: 5 Utility: It provides information on the latest research and advocacy activities. It gives the reader access to the latest studies and has useful information on the home page. The material is free of charge. Rating: 4
Summary: The site is valuable to patients and caregivers. It provides updated information on research in COPD and pulmonary rehabilitation as well as advocacy and is interactive – answering questions from its readers. National Lung Health Education Program (NLHEP)NLHEP is a national organization dedicated to the prevention of lung disease and the promotion of lung health. It is a collaboration between the U.S. government al and health professional organizations that champion the concept of early detection of both COPD and lung cancer. This organization has been spearheaded by Dr. Thomas Petty, a recognized pioneer in the field of pulmonary medicine. Authority: The website has input from leading experts, writers, investigators, and people within government and the private sector. Rating: 5 Currency: This website is regularly updated, the last update being 2005. Rating: 4 Accuracy: This website is accurate and up to date. Rating: 5 Navigation & Readability: This site has excellent navigation. Once into the education sections, drop-down menus are continuously available from the top. Patients and caregivers can rapidly link to well-written information. Rating: 4 Utility: This is one of the most informative websites with simple but clear graphics and clear explanations of COPD, spirometry, smoking and frequently asked questions. It has excellent Take-Home-Messages. The material is free of charge. It provides an excellent section on lung cancer. Rating: 5
Summary: The site is valuable to patients and caregivers and represents a unique coalition of academic, private and government. It is an excellent working resource. National Emphysema/COPD AssociationNECA is an organization for patients with COPD. It serves both educational and advocacy roles. It has a newsletter that is packed full of information that is downloadable. Authority: The website has input from patients, therapists, physicians and scientific investigators. It has some commercial sponsorship with little or no apparent influence over the content. Rating: 4 Currency: This website is regularly updated – particularly the newsletter. Rating: 4 Accuracy: This is website is generally accurate. Rating: 4 Navigation & Readability: This site has good navigation. Linking to various pages is easy and rapid. One of its most informative links is to http://www.copd-alert.com/ which distills some of the latest research in the field. Rating: 4 Utility: This is a very informative website, particularly once off the home page. Most material is free of charge. Rating: 4
Summary: The site is valuable to patients and, to some extent, caregivers. One of its strongest areas is its very informative newsletter. Other Important SitesDisclaimerThe author has no personal or financial interest in any of the websites discussed above. Brian Tiep served on the ATS-ERS COPD guidelines committee and had input into the web design and the PDF files. He has no financial relationships bearing on this review. The author of this review is a member of the Board of Directors of the Pulmonary Education and Research Foundation (PERF); every attempt is made to avoid biased comparisons. | 
