A day does not go by in my practice where a patient and/or their family members do not present me with information on a particular disease that they obtained from the internet. This is a very powerful tool that patients have available to them. In most cases, going to the internet is a worthwhile experience. Though in some select cases, going to the internet and looking up a particular disease or problem may have a significantly negative impact.
Over the years, I have seen numerous patients who have delayed seeking treatment for their liver disease based on information that they found on the internet. Patients with chronic hepatitis C are particularly concerned about the side effects associated with antiviral therapy, which would include interferon and ribavirin. By going to the internet and seeking information either on the disease or the treatment, or in particular, the side effects of interferon and ribavirin, the only information they seem to remember is that they will become depressed and possibly suicidal, they will go completely bold, or they will become so dysfunctional from the side effects that they are likely to lose their job because of this. For a patient who is reading this list of potentially serious side effects, especially if they do not feel ill at all, they are going to opt out and postpone therapy as long as they can. Unfortunately, many patients wait years before seeking attention and by that time their disease has advanced possibly to the point where medical therapy would be rendered much less effective. So thus in this case, going to the internet has a definite negative impact on both the disease process and the likelihood of getting a favorable response to therapy.
The other tool on the internet includes an assortment of bulletin boards and chatrooms. These are features of the internet where individual people can post their impression on any topic, but in disease-specific bulletin boards or chatrooms, the particular topic will be a bit more specific with regard to a particular form of liver disease and its associated treatment. Here again, I have a rather strong opinion with regard to these internet tools.
Over the years, I have treated thousands of patients with all facets of liver disease. There is no doubt that some of the therapies are difficult and quite demanding both physically and emotionally on the patient. Despite these reported serious adverse events to the therapies, the best majority of the patients do well. With adequate support systems in place as well as an attentive treatment team including the physician, their nursing staff, as well as interested social workers and mental health professionals, the majority of patients can have a successful course and tolerate interferon and ribavirin. Despite the best of effort, there will be a subset of patients that have disabling side effects from the medication. In many cases, it is the patients that have the worst outcomes with the therapy that gravitate towards the bulletin boards and the chatrooms to share their experience with the therapy. For the naive patient who is simply seeking out information for the first time on hepatitis C, the first impression is that the majority of the entries on the bulletin boards consist of worst case scenario type discussions and this can be quite misleading and does not give the full picture of how one responds to the therapy. As I explained to my patients on almost a daily basis, if every patient described in some of these bulletin boards actually existed, there would be no way that I could come to work enthusiastically wanting to help these patients. The truth is the best majority of the patients do tolerate the medicine albeit with the number of side effects, but nonetheless, it is the absolute minority of patients that present with this worst case scenario type of clinical scenarios. So, to the new patient diagnosed with liver disease who is seeking information on the internet, beware of the bulletin boards and chatrooms for the descriptions put forward may not be representative of what realistically takes place.
With all of the thousands upon thousands of websites that are related to liver disease, cirrhosis, liver transplantation, and various malignancies of the liver, it is a daunting task to figure out which are reliable sites and which you should immediately stay clear off. Generally speaking, websites providing medical information from universities and hospital based websites generally are going to have some inherent credibility as well as checks and balances to the content found on the website. Most educational institutions as well as hospitals will have internal review of specific pages by physicians and other healthcare professionals to insure that the information is current. Websites from pharmaceutical companies likewise are going to be highly regulated and scrutinized. In most cases, the pharmaceutical companies will certainly have information related to their product though, in addition, disease-specific information will be available and will most likely be a credible source of disease-related information.
Websites that you must be somewhat more leery of would be those that are either developed by individuals that are neither of the above. Many well-intentioned patients and those interested in liver disease, organize websites with the hope of educating the greater public. Not having a background in medicine, healthcare, or liver disease, the sources of information that they pulled their information from maybe faulty, outdated, misleading, and potentially a danger to your health. Here, the private citizen is not mandated by any internal checks and balances and it is unlikely that any credible source will review the content for accuracy. Additionally, there are a number of companies that are selling products, a number of products to ease the symptoms or slow down the disease process whereby the website may appear to be informative with regard to liver disease but the subliminal message is that they are selling a product that has neither been tested or produced in any kind of controlled fashion. There is a boom of "herbal therapies" for every facet of liver disease. Again, the origin of these products and the motive for their presence on the web is unclear, though the obvious motive is sales and commercial revenue. These are probably the most dangerous sites to review and I would personally stay clear of them.
The patients with chronic liver disease, in general, is a unique group of patients. In many circumstances, the therapies that are available through medical professionals are toxic with an assortment of side effects. In some cases, the therapy may be worse than the disease with a very narrow therapeutic and safety window. Chronic liver disease, by its very nature, has the potential to lead to progressive damage to the liver leading to increase scarring, cirrhosis, liver cancer, and ultimately liver failure. Liver transplantation is always a possibility when patients reach the later stages of the disease. In this day and age with all of the technology available, it is a frustrating conversation to have with my patients telling them that we have basically exhausted all treatment options and the last resort is transplantation. At this point, patients begin to soul search and look for alternative therapies. The World Wide Web is a huge repository of information on alternative therapies and it is my personal opinion that many of these websites prey on patients who have advanced liver disease with little hope.
If you go to the Google homepage and type in "liver," approximately 62 million websites appear. The number one linking website for the term liver is the ever popular Wikipedia followed by the American Liver Foundation and the National Library of Medicine site MedlinePlus. While Wikipedia comes up very high on most internet searches, I remain leery of its reliability. Certainly, the American Liver Foundation and the National Library of Medicine are trusted sites with reliable and carefully reviewed information.
Typing in the search term "hepatitis" yields roughly 28 million sites with the top sites again including Wikipedia, Kids Health for Parents, and the Centers for Disease Control. The Centers for Disease Control site is an amazing source for liver-related information. The site is well laid out with an exhaustive review of liver disease for the novice and more advanced searcher. Many of their pages are in Spanish. The term "hepatitis C" is controlled by Centers for Disease Control sites as well as the associated government site organized by the National Digestive Disease Information Clearing House. Again, the Centers for Disease Control is an excellent site and should be bookmarked. Additionally, searches for hepatitis A and hepatitis B equally yield results related to Centers for Disease Control pages. Wikipedia continues to pop its head up in the top five sites.
The term cirrhosis again will bring you to sites organized by the NIH and Centers for Disease Control; but this time, a very extensive site organized by Columbia University and Dr. Howard J. Worman brings you to their site. This is a liver disease and gastroenterology website and it displays a laundry list of liver diseases ranging from Alagille Syndrome through Wilson Disease. All of the best majority of these pages and disease states are authored by various linked external sites. I would generally recommend looking at this site though the page was last updated in 2003. Autoimmune hepatitis results in a slightly different set of websites. Again, the National Digestive Disease Information Clearing House, through the National Institute of Health, is the top-ranked site, followed by Columbia University and the MayoClinic.com site. It should be noted that the MayoClinic.com site is well thought out and provides brief explanations of various liver disorders. Liver transplant results in the American Liver Foundation ranking high as well as other top transplant centers in the country. Each of the institutional sites that are represented on the top Google sites range from excellent to poor. The majority of the sponsored links on Google are institutional sites from around the country.
In summary, the World Wide Web is a great resource tool for patients with liver disease. I would certainly encourage patients, as well as their family members and caregivers, to seek out information on the web and share it with your healthcare team. Do not ever be ashamed to share this information with your physician.
When it comes to hepatitis C, there are a number of respected sites that will provide you with accurate and up-to-date information. Stay clear of individual web sites and certainly beware of sites that are promoting the value of herbal therapies or other products that can impact on the disease. The information contained in these sites is unproven and likely overinflated.
Bulletin boards and chatrooms may be of limited value. If you are a complete stranger to these sites, you could certainly walk away with the wrong impression. If you have friends and other patients that you know, and use the bulletin board as a clearing house of information and you feel that these people are reliable, then sharing these stories on the web may have some added value.
Outside of viral hepatitis, the major sites from the Centers for Disease Control as well as the National Institutes of Health are well-written and relatively current sites that offer information at several different levels of detail. Certainly, start with these sites if you are new to browsing.