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Pulmonary Rehabilitation

Brian Carlin, MD
Fellowship Director,
Pulmonary Disease Training Program
Allegheny General Hospital
Pittsburgh, PA
Richard Casaburi, PhD, MD
Medical Director
Rehabilitation Clinical Trials Center
Los Angeles Biomedical Research Institute at Harbor-UCLA Medical Center
Torrance, CA
Margaret Haggerty, APRN, AE-C
Pulmonary Nurse Practitioner and Coordinator
Pulmonary Rehabilitation
Norwalk Hospital
Norwalk, CT
Sherri Katz, MD, CM, FRCP(c)
Pediatric Respirologist
Pediatric Respirology
Children's Hospital of Eastern Ontario
Ottawa, Ontario
Alexander Sy, MD
Associate Professor
Pulmonary, Critical Care, Allergy and Immunology
Wake Forest University Health Sciences
Winston-Salem, NC

Introduction

Pulmonary rehabilitation is a multimodal, multidisciplinary approach to improving the functional status and quality of life of people with chronic lung disease.  Endurance exercise training is the cornerstone of rehabilitation programs, but along with exercise comes increased understanding of the disease process, improved coping skills and a focus on empowering the patient for self management.

Last Update: June 2009

Search

A Google™ search on pulmonary rehabilitation found 1,410,000 sites, pediatric pulmonary rehabilitation 1, 040,000 sites, pulmonary rehabilitation guidelines 875,000 sites, pulmonary rehabilitation programs 1,170,000 sites. These sites included those sponsored by internationally recognized professional societies, local programs, patient-sponsored sites and commercial sites, which were not included. There were many excellent sites sponsored by individual health systems or hospitals, too numerous to include. A consensus of committee members pared the list to the 12 sites reviewed here.

These reviews were written by members of the Pulmonary Rehabilitation Section of the ATS, and edited by Pulmonary Rehabilitation Section Web Director, Margaret Lester.

Best Websites

American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR)

AACVPR is a professional society. Its website covers topics of interest to its members, including legislative and regulatory issues, reimbursement and certification of pulmonary rehabilitation programs. A variety of useful publications are also available.

  1. Authority: This website is sponsored by the American Association of Cardiovascular and Pulmonary Rehabilitation, a worldwide leader in the area of cardiac and pulmonary rehabilitation. It has input from leading experts (physicians, nurses, respiratory therapists, exercise physiologists, occupational therapists and vocational rehabilitation specialists) and investigators in the field. Rating: 5

  2. Currency: This website is regularly updated, with the last update being December 2006. Rating: 5

  3. Accuracy: This website is accurate and up to date. The most recent evidence-based guidelines and legislative information are included. Rating: 5

  4. Navigation & Readability: This site has excellent navigation. Drop-down menus are easily navigated and direct the user to a variety of general sections (education, legislative and regulatory, program certification, employment, resources and publications) and a members-only section. Rating: 5

  5. Utility: This informative website has a large amount of free material. Excellent information on education, legislative and reimbursement issues, program certification and publications is available. In the members-only section, the organization's bimonthly newsletter, newsletter for medical directors of pulmonary rehabilitation, the outcomes resource guide and legislative contact personnel directory are available. Rating: 5

Summary: The site is valuable to those who are providing pulmonary rehabilitation services. Educational information as well as reimbursement information is available to all. Updates on regulatory and legislative issues are constantly updated and are easily found within this website. Excellent links are provided allowing the user to easily and quickly access very current information available in the field of pulmonary rehabilitation.*****

American College of Chest Physicians (ACCP) /CHEST

The ACCP is a professional society. The website includes information for members on pulmonology, critical care and sleep medicine, as well as tremendous educational resources in clinical medicine and in practice management.

  1. Authority: Articles are scholarly and peer reviewed. The ACCP along with the American Association of Cardiovascular and Pulmonary Rehabilitation (AACVPR) published their evidence-based pulmonary rehabilitation guidelines in CHEST in 1997. All the authors involved in this guideline are renowned. The Pulmonary Physiology, Function and Rehabilitation Network of ACCP has completed a revision of pulmonary rehabilitation guidelines this year. In the past, the network has developed guidelines on payment policies. Rating: 5

  2. Currency: Most documents on this website indicate the date of posting. The patient education material does not, but it is accurate. Presumably the revised pulmonary rehabilitation guidelines will be published in the near future, and may lead to some modifications in the patient education section as well. Rating: 4

  3. Accuracy: The description of pulmonary rehabilitation in the patient education section is accurate and detailed, yet understandable. The joint ACCP/AACVPR rehabilitation statement is excellent for its content and accuracy. In an era of evidence-based medicine, the evidence-based guidelines are important, especially with the likely financial burden of providing rehabilitation to a growing population of patients with COPD and other chronic respiratory ailments. Rating: 5

  4. Navigation & Readability: One can find the section for patients under the "Foundation" tab, by selecting the drop-down "Patient Education Guides" and then selecting "Pulmonary Rehabilitation: A Team Approach to Improving Quality of Life." The combined ACCP/AACVPR guidelines document is a landmark article. To get to it, one has to go under the "Education" tab, select "Evidence-Based Guidelines," and from the list select "Current ACCP Guidelines." The approach to these articles is not very intuitive. A separate section for patients would have made it easier to navigate. In the search window, typing the term "pulmonary rehabilitation" does bring up the patient education section as well as the joint ACCP/AACVPR statement, along with a host of articles published under PCCU and other titles, where there is a mention of rehabilitation. The articles are not sorted by relevance. Rating: 4

  5. Utility: This is an excellent site for patients, physicians and other personnel. The joint statement from ACCP and AACVPR is one of the state-of-the-art articles that is a must for all pulmonologists, all personnel involved in pulmonary rehabilitation and physicians-in-training to obtain evidence-based information. The patient education section and the link to the joint ACCP/AACVPR statement are free. For other articles and network activities related to pulmonary rehabilitation, membership to the college is necessary. Rating: 5

Summary: This is a site worth bookmarking and returning to frequently.****1/2

American Thoracic Society/European Respiratory Society Pulmonary Rehabilitation Guidelines

Two of the most respected organizations in the field of pulmonary medicine combined their resources to come up with this comprehensive guideline.

  1. Authority: Written by a committee of experts in the field of pulmonary rehabilitation and approved by the ATS Board of Directors and the ERS Executive Committee. Rating: 5

  2. Currency: Written in late 2005 and published in 2006. Published guideline to serve as an update to the previous statement published by ATS in 1999 and by the ERS in 1997. Rating: 5

  3. Accuracy: Evidence-based guideline backed by an exhaustive bibliography (total of 379 entries). Rating: 5

  4. Navigation & Readability: Readable and broken down into easily readable segments based on the components of pulmonary rehabilitation. It is not an interactive website and therefore it is not searchable except by utilizing the PDF search function by clicking on the binocular icon. No enhancements. Rating: 4

  5. Utility: Free access. Needs a PDF file reader to access. It is a good and comprehensive review of the theory supporting pulmonary rehabilitation including a breakdown of the essential components and the evidence that supports its effectiveness. This is a downloadable printable document. It lacks practical tips on the actual process needed to set up and run a proper pulmonary rehabilitation program. Rating: 5

Summary: When it comes to theory, this may be considered the most authoritative guideline on pulmonary rehabilitation to date.*****

Australian Lung Foundation and the Australian Physiotherapy Association

Produced by the Australian Lung Foundation and the Australian Physiotherapy Association to provide current evidence-based information on running a pulmonary rehabilitation program.

  1. Authority: Written by a committee of pulmonologists, physiotherapists, nurses and psychologists from Australia. The aim of the website is to provide practical tips on management of patients in a pulmonary rehabilitation program. This is well defined and very visible on the website. Rating: 5

  2. Currency: Released March 2006. A link within the website available to access news and updates available since the first release. One can subscribe with an email address and receive updates via email. Rating: 5

  3. Accuracy: Evidence for the recommendations are clearly provided by an exhaustive reference list. The references are also linked and accessible by clicking the links. Rating: 5

  4. Navigation & Readability: The site is easy to navigate and links are easy to understand and follow. Access is a little slow. One or two links did not work. Rating: 4

  5. Utility: Free access. Provides very good practical tools to run and set up a successful pulmonary rehabilitation (PR) program. The Pulmonary Rehabilitation Checklist published on this site would be very beneficial for clinicians who are launching a new PR site. Available resources include examples of brochures, referral letters, invitations and assessment tools. It is also authoritative in providing the theory behind the practice. Rating: 5

Summary: Despite the occasional long wait for the download if you are on this side of the world, it is well worth it because of the content.*****

BC Health (British Columbia, Canada)

This document was written as a segment in a comprehensive website covering various health conditions including nonpulmonary entities. This website was created by the Health Department of the province of British Columbia in Canada. It is endorsed by various organizations including BC Medical Association, BC College of Family Physicians, College of Registered Nurses of British Columbia and the College of Pharmacists of British Columbia.

  1. Authority: The aim of the website is to provide tips for self care for patients and health care providers. Different authors write each segment. Credentials of the authors are not provided. Each segment is reviewed by pulmonologists or general practitioners either from Canada or the United States. Because it is written as a self-help website that gives practical tips, the bibliography is not exhaustive. Rating: 4

  2. Currency: Date of update clearly listed at the bottom of each page. Different segments have update dates ranging from 2004 to 2005. Rating: 5

  3. Accuracy: Recommendations are supported by limited (usually up to 5) references at the end of each segment. Rating: 4

  4. Navigation & Readability: The website is dynamic with interactive segments and easily searchable. Interactive segments, including search your knowledge, provide a good review of concepts. Clearly labeled links including Why, How and Action Set lead to segments opening in a new window. These may include illustrations or photographs of how to do various exercises (e.g., stretching, upper arm exercises, lower limb exercises, etc.). The pictures that illustrate proper breathing during toning exercises (e.g., legs lifts) are especially beneficial for patients who do not have access to structured programs and want to engage in home exercise. Each page has an option for printing by clicking the printer friendly link. Rating: 5

  5. Utility: The website was written for patients in a simple and understandable language. It spends less space on theory and more on practical tips. It includes self-help tips on nutrition and weight loss. As suggested in the title, it is written specifically for patients with chronic obstructive lung disease. Rating: 5

Summary: A very good resource for patients. It is easy to understand and contains many good practical tips.****1/2

British Lung Foundation

The mission of the British Lung Foundation is to support people who are affected by lung disease and help them understand their condition, to raise awareness of lung disease and to fund research.

  1. Authority: Leading experts in the field of lung disease are trustees of the foundation and provide both a professional and lay perspective. Rating: 5

  2. Currency: Although the material is referenced as being up to date as of November 2003, the material that is presented is currently up to date. Rating: 5

  3. Accuracy: The content of the material on pulmonary rehabilitation is directed toward a person who has lung disease and is accurate. Rating: 5

  4. Navigation & Readability: The homepage for the British Lung Foundation is, in general, easy to navigate. The information on pulmonary rehabilitation is found under the Diagnosis and Treatment section on a drop-down menu. The link provided above allows one to navigate directly to this page. The material is very readable, although the small font size may lessen the readability for some patients. Rating: 5

  5. Utility: The material presented on pulmonary rehabilitation is useful for patients who have lung disease and also for professionals who wish to provide information to patients regarding the components and benefits of pulmonary rehabilitation. The information provided within the rest of the website is also useful for patient education. All of the information is understandable and is free to access. Rating: 5

Summary: This website provides basic information that would be useful for general patient education. The information on pulmonary rehabilitation is presented in a very simple and readable format and is of primary value to patients who have lung disease. This is good for patients and professionals.

British Thoracic Society Guidelines

Published by the British Thoracic Society in 2001, these guidelines serve as an update to the American Thoracic Society (ATS) Guidelines published in 1999.

  1. Authority: This document was written by members of the Standards of Care Committee of the British Thoracic Society. The committee is multidisciplinary and composed of pulmonologists (with and without expertise or interest in pulmonary rehabilitation), a physiotherapist, clinical psychologists and an exercise physiologist. Rating: 5

  2. Currency: Published in 2001, there are no recent updates. Rating: 3

  3. Accuracy: Supported by an adequate bibliography (87 entries), information is accurate to the date it was published. Rating: 4

  4. Navigation & Readability: this material is readable, but the website is static without enhancement or search capability except utilizing the PDF search function. Rating: 4

  5. Utility: The document has free access, but requires a PDF file reader to be access. The theory behind pulmonary rehabilitation is provided, but this document lacks practical recommendations on how to start and run a successful pulmonary rehabilitation program. Rating: 4

Summary: This is still a classic manuscript, despite not being updated.****

Coalition for Pulmonary Fibrosis (CPF)

The Coalition for Pulmonary Fibrosis (CPF) is a 501(c)(3) nonprofit organization founded in 2001. The CPF aims to raise awareness about pulmonary fibrosis, including information on open clinical trials, lung transplantation, ongoing research, Medicare policies and living with the disease.

  1. Authority: The scientific advisory board members and board of directors include prominent academicians and researchers involved for many years in interstitial lung diseases. No international authorities are represented. All partners allied with the CPF are listed, along with contact information. Commercial entities sponsoring drug trials are listed. A group from reputable medical centers with extensive experience in the management of pulmonary fibrosis is credited for the section on pulmonary rehabilitation and oxygen therapy. Rating: 4

  2. Currency: The material on pulmonary rehabilitation is not dated and it is therefore not possible to determine whether it is current. In all fairness, however, with little published information available specifically on pulmonary rehabilitation in interstitial lung diseases, currency is not very relevant. However, other references are current. Rating: 3

  3. Accuracy: The statement on pulmonary rehabilitation is general in nature and does not pertain specifically to patients with pulmonary fibrosis. All references are on pulmonary rehabilitation in general, or based on experience gleaned from COPD patients. The statement mentions that pulmonary rehabilitation programs are designed to help prolong life. However, survival benefit has not been proven to accrue in this patient population with either pulmonary rehabilitation or oxygen therapy. The mention of “ventilatory therapy as one of the components of pulmonary rehabilitation is vague and unlikely to be understood by patients or physicians. Rating: 2

  4. Navigation & Readability: The section on pulmonary rehabilitation is combined with oxygen management in the section for patients. There is only a passing reference in the section for physicians. The website is pleasing and easy to navigate. Rating: 4

  5. Utility: The material is free; no membership is necessary. Members do get the benefit of quarterly newsletters, emails about latest news and local events. Corporate and other organization involvement is identified and acknowledged in all materials published. It is a good single site to recommend to patients regarding the general benefits of pulmonary rehabilitation, while getting updated information on pulmonary fibrosis. Patients can identify regional meetings and get links to studies being supported by the CPF and other ongoing trials. Rating: 3

Summary: The entire website is easy to navigate and the links will be useful to the practicing pulmonologist needing quick information and landmark articles. It is not likely to be valued as a resource for pulmonologists and researchers actively working in the field of interstitial lung disease. It is a good resource for patients with pulmonary fibrosis.***

National Jewish Medical and Research Center

The National Jewish Medical and Research Center website describing their Pediatric Pulmonary Rehabilitation program is comprehensive and multidisciplinary, focusing on the unique aspects of pediatric care. It is the only site dedicated to pediatric rehabilitation identified through an exhaustive search and it is to be commended for its thorough presentation. This site describes different aspects of pediatric pulmonary rehabilitation, with detailed information provided on physical, occupational, recreation and speech therapies. Indications for referral and descriptions of the different treatment programs available are succinctly and clearly outlined.

  1. Authority: This website is sponsored by National Jewish Medical and Research Center, a leading hospital in the treatment of respiratory disease. Its mission is clearly outlined at the beginning of each section on the website, detailing both goals of the program and information that will be found though further navigation within the site. All material on this website is copyrighted in 2006, indicating its currency. Individual contributors are occasionally identified in subsections of the website, such as speech therapy, but are otherwise not easily identifiable. Descriptions of medical conditions are clear and logical. They are credited to individuals, who have approved the content within this year. References to the medical literature and a bibliography are not provided, though links to additional web-based resources are occasionally provided. Sources of the information provided on this website are not disclosed, although all links appear to be to information within the National Jewish Medical and Research Center. Rating: 4

  2. Currency: All information provided on this website is copyrighted in 2006 and is current. Since general information regarding the conditions to which the treatment program applies is static, timeliness is less crucial. Rating: 5

  3. Accuracy: Although no references are provided for the information contained within the website, the information is general and appears accurate with respect to description of medical conditions. The majority of information provided, however, consists of broad descriptions of the program available at National Jewish Medical and Research Center and therefore does not require supportive evidence. Additionally, there is little literature in pediatrics that would describe such a program, and this institution is noted as a leader in this field. Rating: 5

  4. Navigation & Readability: The layout of this site is aesthetically pleasing, simple and extremely user-friendly. The intended audience is the lay public, for which the language is appropriate. The descriptions are detailed and clear. Background information is provided in an easily accessible manner. The links within the site work well and it is easy to return to the main menu of topics. While not interactive and lacking video, the content of the site is well communicated and does not require additional multimedia in order to deliver its messages. Rating: 5

  5. Utility: Material on this website is free and easily accessible. It is intended as an educational resource for prospective patients. While it provides a model to be emulated in developing a Pediatric Rehabilitation Program, it does not provide evidence-based information for physicians. It achieves its goal, however, in educating the public and would be worthy of a bookmark for patients seeking resources or examples of multidisciplinary care. The descriptions of medical conditions including vocal cord dysfunction, asthma and gastroesophageal reflux are well written and, while not downloadable, may be printed. There are links on the website for self referral to become a patient of National Jewish Medical and Research Center. Rating: 5

Summary: This site endeavors to describe an institutional program for comprehensive evaluation and treatment of children requiring Pediatric Pulmonary Rehabilitation. The program is well described and the services available are described in an organized and coherent fashion. Educational information regarding the specific services provided and conditions for which patients might be referred are well worded and complete. While lacking references to medical literature, this website achieves its goals of educating patients, outlining their program and available resources. It is unique in providing a pediatric perspective on pulmonary rehabilitation and is certainly worthy of a bookmark.*****

National Blueprint: Increasing Physical Activity Among Adults Aged 50 and Older

The National Blueprint site was developed as a guide for organizations, associations and agencies to plan strategies to help people age 50 and older increase their physical activity. It includes an executive summary, downloadable presentations and information for both professionals and the public. In the overview section, it states that the Blueprint is in the public domain and may be freely copied and distributed. The Blueprint site contains a great deal of background information about the Blueprint project. The most useful section for the public is public information/aging tips and for professionals are some of the downloadable presentations. Information is not specific to people with chronic lung disease, but does provide information on fitness testing and motivational and exercise information for patients. Much of the patient-oriented information could be used to supplement handouts used in pulmonary rehabilitation programs and support groups.

  1. Authority: Several national organizations participated in the Blueprint project including The Robert Wood Johnson Foundation, the National Institute on Aging, the CDC and AARP. Experts from organizations in medicine, sports medicine, academia and communications were included in the project. Rating: 5

  2. Currency: The website is up to date. Rating: 4

  3. Accuracy: The material is accurate. Rating: 4

  4. Navigation & Readability: The site is relatively easy to navigate through. It is heavy on background information. The areas of interest to the public are located on the left sidebar about halfway down the column and may be overlooked. Rating: 2

  5. Utility: Most of the material is free and can be downloaded. Links to other materials that charge a fee are headed publications and other resources. Rating: 2

Summary: The National Blueprint site is a good supplemental resource for ATS members who are interested in additional ways to motivate their patients to exercise by linking to other organizations who address the benefits of physical activity. It is not specific to chronic lung disease but may help clinicians and patients to think outside the confines of lung disease when addressing the need to increase activity.**1/2

Portable Oxygen: A User's Perspective:

An important component of pulmonary rehabilitation involves educating participants regarding therapies available to them. This, of course, includes pharmacological therapies but, for many patients, this also includes long-term oxygen therapy (LTOT). Oxygen therapy is intrusive, complicated and expensive. There are a number of delivery devices available and dose adjustment is often required. Prescribing physicians usually do a poor job of explaining the complexities of LTOT. This website was created by Pete Wilson, a COPD patient receiving LTOT. Though retired, he has a PhD and a background in instructional development. He has no affiliation with the oxygen industry. He created this website to help patients deal with the complexities of this therapy. However, there is good information here for rehabilitation professionals and for prescribers. Topics covered well include liquid vs. compressed oxygen, pulsed-dose conservers, oximeters, flying and motoring with oxygen, dealing with oxygen suppliers and oxygen safety.

  1. Authority: This website's detailed and indepth information on a number of aspects of oxygen therapy qualifies Dr. Wilson to be considered an authority in this field. Nevertheless, as a single person's effort, it arguably lacks the authority that a group effort might have provided. Rating: 3

  2. Currency: Much of the material on this website was composed in 2001, with substantial updates in 2003 and some in 2005. Recent important regulations regarding oxygen use while flying and changes in Medicare reimbursement are not included, nor is information on the new generation of portable concentrators. Rating: 3

  3. Accuracy: Information in a number of areas is indepth and accurate. Rating: 4

  4. Navigation & Readability: The site has excellent navigation to all pages. The very pleasant writing style makes this a pleasure to read. Comments from oxygen users are featured and links to a number of other information sources are provided. Rating: 5

  5. Utility: An hour spent on this website will tell a patient much of what he/she needs to know about portable oxygen. The material is unbiased and free of charge. The lack of some recent developments in LTOT somewhat detracts from utility. Rating: 4

Summary: This is a valuable website both for patients and for health care providers. It will help visitors to navigate the confusing field of long-term oxygen therapy. It focuses on the practical aspects of oxygen therapy and is not primarily a pulmonary rehabilitation website.****

Pulmonary Education & Research Foundation (PERF)

The PERF website lists as its goal "providing help for those with chronic respiratory disease through education, research and information." It provides information to both clinicians and patients about current topics in chronic lung disease. The PERF site is easy to use and very informative. It is divided into several areas: • Education: Contains topics directed toward patients that cover a variety of topics. The articles are easy to read and very informative. One of the articles (Essential of Pulmonary Rehabilitation) is also available in Spanish. • Lung Cancer Frontiers: Reviews recent research from the Snowdrift Pulmonary Conference and is directed toward clinicians. Medscape Link and Scientific Articles: Links to recent articles of interest to clinicians. News: Links to topical news and legislation, e.g., Home Oxygen Protection Act and legislation about reimbursement for pulmonary rehabilitation. Second Wind Newsletter: An informative newsletter for patients. It is free to electronic subscribers and easy to sign up for.

  1. Authority: The source sponsor is the Pulmonary Education and Research Foundation. The board of directors are well respected leaders in the field of pulmonary medicine, pulmonary rehabilitation, nursing and respiratory therapy. The About Us section is well done and clearly identifies board members. Contributors are experts in their respective areas. Most of the material is evidence based. Opinion pieces and news items are clearly identified as such. The recommended Internet site section contains links to the major professional organizations. There are a few links to commercial product and pharmaceutical sites intermixed with professional sites. Rating: 5

  2. Currency: The material is generally up to date. Some of the linked scientific articles are more than 5-years old, but are good source material for chronic lung disease. New articles are identified as such. Rating: 3

  3. Accuracy: The content is accurate and based on the latest scientific evidence. Speculative areas are identified. Rating: 4

  4. Navigation & Readability: The site is easy to use and navigate through. It is set up so that the reader can focus on areas of interest. The material is understandable to its intended audience. The links to other sites work easily. The graphics are simple but enhance the message. It is not interactive, but patients may email questions to the Second Wind Newsletter. Rating: 5

  5. Utility: The material is free. A small fee ($20) is required for the mailed newsletter. Membership to some of the linked sites, e.g., Medscape, is required but often free. Rating: 5 Summary Rating: 5

Summary: The PERF site is an excellent resource for professionals who are particularly interested in patient education, pulmonary rehabilitation and chronic lung disease.****1/2

Disclaimer

The author has no personal or financial interest in any of the websites discussed above. The author has no personal or financial interest in any of the websites discussed above.