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Old Jul 26, 2006, 01:34 AM
bloom08 bloom08 is offline
How to Find Info. on Biliary Atresia and Other Pediatric Liver Diseases


How to Find Info. on Biliary Atresia and Other Pediatric Liver Diseases

A recent Washington Post article reports, "It turns out that patients we acknowledge as stewards of their care tend to be more satisfied with their treatment. Several studies also seem to suggest that informed patients tend to have better outcomes."

Well, that's all fine and good, but with rare pediatric liver diseases, how does a parent get informed? For biliary atresia (BA), there is no "What to expect with BA" guide, no "BA 101: Everything a parent needs to know." That sort of info. just doesn't exist.

For those readers who don't deal with BA, it's important to realize that the experience of BA is intense. It's like being sideswiped by a really big truck you never saw coming. A type of truck that you never even knew existed. And then you wake up, in crumpled pieces, in a country you'd never even thought about visiting.

Your friends and family don't want to believe it, and they say, no, it's not a different country. Come back to us, come back to the life we all loved. Let's make everything normal again. But you know, in your bones, that your life has been irrevocably changed. The fact that you look ok, you look normal, the baby may even look well -it's all deceiving, because inside, it's a different story.

Being informed helps - in fact, I'd argue that it's a very healthy reaction. On a personal note, as an aunt and not a parent, it took me four years to get through the denial. Once through, I had a very strong desire once to figure out "WHAT happened to us? What the heck?!"

I see this need to be informed in other families time and time again. For example, a new mom with a 6-month old with biliary atresia recently wrote to me, asking:
I am very new to liver disease. How do I find these articles you referenced ...? Can I find, or order the text through my local library? Or would a trip to the University a better route? Can anyone willing for fork out the hefty subscription fee be able to get a subscription to the journal? Sorry for the novice questions, but would appreciate any help you might give.

Basic Articles

Here are a few suggestions on how to start getting informed.

My favorite basic article is the one that Dorothy, a past Forum Administrator at Liver Families, wrote a while back. Next on my list, though much more "medicalized," is the BA article by emedicine.

Once you've waded through those, the next stop is to plunge into, a service of the U.S. National Library of Medicine and the National Institutes of Health. I set up a pubmed feed on biliary atresia in my blog (in the lower right hand corner) so that I can keep up with the latest article abstracts.

It's important to realize that no one article is going to help your child. Instead, what the articles will give you is a sense of the conversations that doctors and other medical specialists are having about the disease - what causes it, how to treat it, how the kids with BA are doing, etc. Sometimes the conversations are back and forth between different authors, and sometimes the conversations are ones that an author is having with him/herself over time.

Because the literature is broad, and medicine changes so quickly, I limit my reading to articles published within the last five years. Articles from the 1940s are just not so helpful, right? Right. Also, I don't read articles about mice. When that line of research gets advanced enough to tell me something about actual kids, well then I want to know. Until then, mice are not people; for my purposes those articles aren't relevant.

The great thing about pubmed is that you can search for "biliary atresia" and other key words, so, for instance, "biliary atresia" and "outcomes." Or "epidemiology" (how many babies get this?). Or "etiology" (what causes it?). Or cholangitis. Or any of a number of questions that you may have related to the subject of BA.

EBAR Library

The European Biliary Atresia Registry also has a reference library of 2000 plus abstracts on their website. This library is helpful because it's already tagged and sorted by category: etiology and basic research, diagnosis and therapy, portoenterostomy (Kasai), liver transplantation, miscellaneous, review and overview papers. It's not quite categorized how I would do it, but no matter, I always have (see below).

I also subscribe to for their weekly list of the newest articles available in the subject of liver disease.

Finding Articles for Free

Once you find recent abstracts in an area of BA study that's helpful to you, the next step may be to find the actual article. Many of them are available for a fee, and often the fees are quite high. Consider your budget for articles over the next decade, and you can see that the fees can add up quickly.

The question becomes how to find the articles for free. First, check the journal's own website. On rare occasions, the article you want will be available.

Alternately, if you really want an article, one way is to check with your local librarian. Or your local medical library. When I lived in Roanoke, VA, they had a higher education center with a library where they would get any article for me for free. It was an amazing service, and I haven't found anything like that since. They even let me send them emails requesting articles, so that I didn't have to make a physical trip in. It rocked. Keeping Track of Your Research

I just started using to "bookmark" abstracts that I like and tag them with key words. is great because it's an online bookmarking service that's free and I can access it from anywhere - so if I'm doing research at a library, I can tag interesting sites, and still find them again when I'm home. And the very cool thing is that if you or any other researchers use the same tags that I use, then I'd have access to those articles as well!

Support Groups and Blogs

BA is sometimes mistaken for Alagille's syndrome and rarely for PFIC. For these pediatric liver diseases, and also for Alpha-1, it's worth looking for support groups. (The disease names just mentioned link to helpful support groups.) Sometimes it's easier to just ask a peer than it is to wade through a bunch of articles.

Disease-specific blogs can be helpful as well. To find blogs, there are several tools - google's blog search, blogger's search function, technorati's and many more. Alternately, you could go to Liver Families and ask "families who know" about their favorite disease-related blogs. For instance, if you did that you would eventually be referred to this blog from a "mom who passionately believes in helping to find a cure for her daughters' genetic disorder: Alpha-1 Antitrypsin Deficiency."

As always, ask your doctor first before acting on anything that you read online.

Asking Questions

My final observation is that the process of asking questions has power in and of itself. The Washington Post article cited above concludes,
For the ideal combination, mix an informed patient with an inquiring physician. Arthur Caplan, chairman of the medical ethics department at the University of Pennsylvania, likes to cite a quote attributed to the ancient Greek physician Galen: "The best physician is something of a philosopher." Such a physician does more than "pose questions," says Caplan. He "isn't afraid to have them asked. The process of questioning can lead to understanding and patient satisfaction."

Last edited by Mika; Feb 10, 2009 at 03:07 PM.
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