Educational Resources for Lung Transplantation for Healthcare Professionals
Introduction
Lung transplantation has become a therapeutic option for several end-stage lung diseases over the past 20 years. According to the International Society of Heart and Lung Registry, approximately 2708 lung transplants were performed in 2007 with over 25,000 lung transplants performed over the past 20 years. The most common indications for lung transplantation are chronic obstructive pulmonary disease (COPD), idiopathic pulmonary fibrosis, cystic fibrosis and primary pulmonary hypertension. Other indications include sarcoidosis, bronchiectasis and other interstitial lung diseases (1).
The most common complications after lung transplantation include pulmonary infections, primary graft dysfunction (ischemia reperfusion injury) and rejection, both acute and chronic. Overall survival after transplantation has slightly improved due to improved donor preservation strategies, better surgical techniques and newer immunosuppressive therapies. Currently, the 1-year survival rate after lung transplantation is approximately 80%, but the 5-year survival remains low at approximately 50% due to chronic rejection (1).
Last Update: December 2009
Search
A Google™ search yielded 11.4 million sites for the terms “lung transplantation” and “lung transplant.” The first 100 sites were reviewed in detail. The majority of these websites include individual university lung transplant homepages providing information to non-healthcare professionals about expectations and other specifics of the lung transplant program. Other common sites included transplant support groups, general education (directed to the lay public) and individual blogs of success stories regarding lung transplantation. The majority of these sites would be of limited clinical utility to individuals in the healthcare field. The following websites were the most informative sites for healthcare professionals interested in lung transplantation.
Best Websites
International Society of Heart and Lung Transplantation
This website is a resource for physicians interested in either heart or lung transplantation. The ISHLT was created in 1981 to promote the science and treatment for end-stage heart and lung diseases. This site discusses new developments, recent guidelines and data from the international registries of heart and lung transplantation.
Authority: The ISHLT is the premier organization involved in lung transplantation. This society sponsors the Annual Heart and Lung Transplantation meeting, is the largest venue for the latest research developments in the field of heart and lung transplantation. The society also provides a forum for active members of lung transplant programs to refine several clinical aspects of transplantation, including the development and revision of guidelines for selection criteria, grading systems for primary graft dysfunction and acute rejection after lung or heart-lung transplantation, and updating diagnostic criteria for chronic rejection after lung transplantation. In addition, the International Registry provides important up-to-date information regarding the status of lung transplantation worldwide. Rating: 5
Currency: The website is an active site that is updated on a regular basis, although the frequency of updates is not mentioned. Information contained on this site includes the latest trends regarding heart and lung transplantation. Rating: 5
Accuracy: The material that is presented on this website is an accurate depiction of the latest developments in the field of lung transplantation. The registry is often used as an indicator of the current status of lung transplantation. The members of the society are leaders in the field of heart and lung transplantation. Rating: 5
Navigation & Readability: The site is easy to navigate due to the headers on the homepage. The links are reliable and appropriate. Rating: 5
Utility: The recent guidelines and registry information can be attained easily and free of cost. The monographs and access to the society's journal is available for a fee. The external links enable the viewers to connect with important information to other sites on the web. Rating: 5
Summary: Overall, this is an excellent site for physicians who are interested in the latest information regarding lung transplantation.
United Networking of Organ Sharing (UNOS)
UNOS is a private, nonprofit organization that received the first Organ Procurement and Transplantation Network (OPTN) contract with the Health Resources and Services Administration of the US Department of Health and Human Services (HHS). This organization has been the primary procurement organization for solid organ transplants in the United States over the past 20 years. Information regarding current performance data for individual transplant sites for lung transplant can be obtained.
Authority: The site is the leading authority regarding the current solid organ transplant waiting list and the policies regarding donor organ procurement. Information includes current donor listing policies, donor procurement strategies and the most recent news articles on organ donation. Rating: 5
Currency: The site is updated on a daily basis as reflected by the number of patients that are awaiting transplantation. In addition, the links to articles posted on the homepage were dated within the past month. Rating: 5
Accuracy: The information presented on this site is accurate. The members of UNOS are the leaders in the field of lung transplantation. Rating: 5
Navigation & Readability: The site is easy to navigate for recent articles and news stories on organ donation. However, in order to access information regarding lung transplantation, several internal links need to be followed to retrieve this information. The site is not user friendly for individuals interested only in lung transplantation. Rating: 3
Utility: This site is useful to patients and physicians interested in understanding the latest news in the field of organ donation. Its utility for lung transplantation, in particular, is slightly limited. Regardless, this site remains the authority for lung transplant-related organ donation. Rating: 4
Summary: Overall, this is the premier site for all solid organ transplant donation.
U.S. Transplant: Scientific Registry of Transplant Recipients (SRTR)
SRTR is an ongoing evaluation of the scientific and clinical status of solid organ transplants in the United States. The registry is developed by the US Department of Human and Health Services in conjunction with Arbor Research Collaborative for Health and the University of Michigan. The annual report includes comprehensive data on solid organ transplantation during the last 10 years. It also includes data highlights and trends, allocation policies and new areas of research in transplantation, as well as numerous resources for transplant professionals, patients and their families and researchers.
Authority: The site contains the latest information regarding the trends in lung transplantation over the past 10 years. The information provided is comprehensive and is presented in table and graph form. The data included is reported by individual centers to UNOS. Rating: 5
Currency: The site appears to relay information regarding transplantation in the United States in real time. The homepage includes several new articles. Rating: 5
Accuracy: The accuracy of the information is dependent upon the information reported by the individual centers. The data is analyzed appropriately by a large staff of transplant physicians, epidemiologists and biostatisticians. Rating: 5
Navigation & Readability: The site is fairly easy to navigate but is clearly geared towards individuals with some background in transplantation. Rating: 4
Utility: This site is most helpful for transplant physicians assessing the latest trends in solid organ transplantation. Rating: 4
Summary: Overall, this site contains the latest data regarding transplantation. The data is rigorously analyzed and placed in tabular or graphic format. Again, this site would be most useful for individuals that have some prior knowledge regarding transplantation.
Medline Plus
This is the website from the National Library of Medicine and the National Institutes of Health. The site contains information that appears to be directed towards patients. However, it does contain important information that may be informative to physicians interested in lung transplantation.
Authority: The site contains both internal and external links to other sites that describe several aspects of the transplant process. Many of these links are to websites of individual university transplant programs that have provided their patients more information regarding transplantation. Rating: 4
Currency: The website is up to date. The webpage for lung transplantation has a date posted a few months prior to the current date. The links are current and reflect websites that include present knowledge of transplantation. Rating: 5
Accuracy: The accuracy of the material that is presented is dependent upon the accuracy of the sites that are included in the links. They appear to be reputable sites with appropriate information. Rating: 4
Navigation & Readability: This site is easy to navigate. The different aspects of lung transplantation are clearly outlined. The internal/external links are straightforward. Rating: 5
Utility: This site provides important information to patients and physicians interested in transplantation. Much of the information is based on links to other websites, but access to this information is contained on one concise webpage. Rating: 4
Summary: Overall, this is a good site for both patients and physicians interested in lung transplantation.
Clinical Trials
This website is a site for clinical research studies that are sponsored by either the federal government or by private industry. The site is run by the National Institutes of Health and the National Library of Medicine in conjunction with the Food and Drug Administration. Studies are submitted to the website by either the principal investigator, government agency or the study sponsor.
Authority: The site includes several studies that are either actively recruiting or will be recruiting lung transplant recipients. The rationale for the study, inclusion criteria, detail of study protocol and contact information is presented for each study. Each study is identified by an identification number that can be referenced by the reader. Rating: 4
Currency: The information posted appears current, although no dates are listed on the website. However, there are several studies that may no longer be recruiting subjects. It is not clear when these studies will be removed from the website. Rating: 4
Accuracy: The material presented for each study appears accurate. However, inclusion of studies on this site is dependent upon the investigators conducting the study. Therefore, this site does not include all studies that are being conducted in lung transplantation. The material presented for each study is dependent upon the member of the study entering the study information. Rating: 3
Navigation & Readability: The website is easy to navigate. The studies that are listed are easy to follow. In addition, one is able to determine lung transplantation studies that are located in a specific geographic region of the United States. Rating: 5
Utility: The site is useful for physicians or patients who are interested in participating in studies in lung transplantation. The information provided for each study is brief but is a good overview of what the study would entail. Rating: 4
Summary: Overall, this site is useful if someone is interested in the types of studies that are being conducted in the field of lung transplantation.
American College of Chest Physicians
The ACCP is a group of physicians whose mission is to prevent and treat diseases of the chest through leadership, education, research and communication. The ACCP maintains a close relationship with government agencies that affect chest medicine. The homepage contains a link to Networks, which then identifies Transplant Network.
Authority: Once on the Transplant Network page, there are several links to other transplant websites including transplant programs, disease-specific websites and other transplant-related sites. The list is helpful for both healthcare professionals and patients who are interested in learning more about lung transplant. However, this list is by no means comprehensive. There are several other active lung transplant programs that are not included in this site. Rating: 4
Currency: The site contains links to websites that are active and updated. However, it is unclear when this page was last updated. Rating: 3
Accuracy: The accuracy of the information obtained regarding transplantation is dependent upon the sites that are represented on this page. They all appear to be reputable websites. Rating: 4
Navigation & Readability: It is difficult to navigate the initial homepage unless one is aware that the lung transplant information is included in the Transplant Network link. However, after reaching the Transplant Network site, the subsequent links are straightforward and easy to navigate. Rating: 4
Utility: This site is most useful for patients and physicians who would like to obtain further information regarding transplantation. The information provided regarding each site is brief but helpful. Rating: 4
Summary: Overall, this site contains links to several websites that would be useful to both patients and healthcare professionals interested in lung transplantation. Of note, the links included on this site do not reflect all of the lung transplant centers in the United States.
eMedicine
eMedicine is a private, peer-reviewed site that is written by expert physicians for patients.
Authority: The site provides a general overview of lung transplantation. There are pictures of abnormal CXRs, acute rejection and surgical aspects of the transplant procedure included in the article. The authors are established academic physicians whose credentials are listed with each article. Rating: 4
Currency: The site relays current information regarding lung transplantation. Although the website is updated on a daily basis, there is significant variability in the updates on each specific article. Rating: 4
Accuracy: The information that is presented is accurate but incomplete. A comprehensive bibliography is presented at the end of each article. Rating: 3
Navigation & Readability: The site includes one large article on lung transplantation that highlights the selection criteria for lung transplantation. There are other articles on various aspects of transplantation that are not specific to lung transplantation. Rating: 4
Utility: This site is most useful for patients and physicians who would like a basic overview of lung transplantation. The data presented is incomplete and not specific to lung transplantation, both of which diminish its utility. Rating: 3
Summary: Overall, this site provides a brief overview of lung transplantation and is most beneficial to patients and physicians early in their training.
American Thoracic Society
The American Thoracic Society website includes some important articles that have been recently published in the field of lung transplantation. Although these articles are directed towards pulmonary/critical care fellows, they are useful for any healthcare professional interested in furthering their knowledge in the field of lung transplantation.
Authority: The articles are a subset of current papers available on lung transplantation. Some of these articles are outdated and therefore are not the most recent authority on the topic. Rating: 3
Currency: The articles quoted on this page are important in the field of transplantation but are by no means a comprehensive review of lung transplantation. Rating: 3
Accuracy: The page consists of important papers in the field of lung transplantation that are published in reputable journals. Some of the papers were published in 2005. Rating: 3
Navigation & Readability: This is one page on the ATS website that discusses several recent important papers in the field of transplantation. The page is easy to navigate, as it contains direct links to PubMed. Rating: 5
Utility: The site provides easy access in one location to articles of interest in the field of lung transplantation. Rating: 3
Summary: Overall, this is a concise site that enables one to easily access relevant papers in the field of lung transplantation. The site is limited by the number of articles and the dates of some of the articles.
Other Important Sites
- The American Society for Histocompatibility and Immunogenetics
http://www.ashi-hla.orgThe American Society for Histocompatibility and Immunogenetics presents information regarding immunogenetics and transplant immunology. This site is geared towards transplant professionals.
- The American Foundation for Donation and Transplantation
http://www.seopf.orgThe goal of The American Foundation for Donation and Transplantation is to enhance the donation, procurement and transplantation of organs and tissues through scientific studies and professional education. This site is directed towards healthcare professionals interested in organ donation and transplantation.
- The Organization of Transplant Professionals
http://www.natco1.orgThis site provides education and information regarding transplantation for the healthcare professional.
- Alpha-1 Association
http://www.alpha1.orgThis site is directed towards patients and family members of patients with alpha-1 antitrypsin deficiency.
- Coalition for Pulmonary Fibrosis
http://www.coalitionforpf.orgThis site is directed towards patients, family members and physicians caring for patients with idiopathic pulmonary fibrosis (IPF). The site discusses the latest news and research in the field of IPF.
- Cystic Fibrosis Foundation
http://www.cff.orgThis site is directed towards patients, family members and physicians taking care of patients with cystic fibrosis (CF). The site discusses the latest news and research in the field of CF.
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.
References
- Christie JD, Edwards LB, Aurora P, et al. The registry of the International Society of Heart and Lung Transplantation: twenty-sixth official adult lung and heart-lung transplantation Report-2009. J Heart Lung Transplant 2009;28:1031-1049.
