Archive for Fetal & Pediatric Medicine
April 12, 2007 at 9:03 pm · Filed under Minds, Brains, & inbetween + Fetal & Pediatric Medicine
The next time I read anyone saying that “autism is not a disorder but simply a different way of being,” and using the stupid label neurodiversity (or worse, the reverse term neurotypical), I’m pointing them to this study:
Autism Costs Society An Estimated $3 Million Per Patient, According To Report
Each individual with autism accrues about $3.2 million in costs to society over his or her lifetime, with lost productivity and adult care being the most expensive components, according to a report in the April issue of Archives of Pediatrics & Adolescent Medicine, a theme issue on autism spectrum disorders.
read the rest of the article at Science Daily
Sure we should treat autistics like human beings rather than broken misfit toys to be fixed. That goes without saying really. As does the idea that autistics should be supported in a manner that best supports their mindset.
Cure = Genocide!?!
There is no way to cure autism once it is set in, and I doubt we’ll ever find a cure that works that way. However, there may be hope to tackle it earlier through gene therapy or other means during the fetal development process. Some of the anti-cure zealots of the Autism rights movement refer to this form of prevention as genocide.
Now where they do have a bit of a point is when we only have the technology for prenatal diagnosis but not treatment. In this situation the mother is given only the options of either going forward with the pregnancy or termination. this is the scenario put forth by the reactionary people behind the The Autistic Genocide Clock.
Of course all this assumes that all our diagnosis tests are really accurate and highly predictive, which is a BIG if; usually the level of prognostication is low unless it’s a blatant physical defect. Most likely the parents will be told something like: “The test results show that your fetus has a XX% chance of developing autism. This is not a guarantee that your child will have autism and we don’t know where on the spectrum of autism your child will be. It could be mild or it could be severe” After, this it’s up to the mother.
It’s not good news to be sure, and some mothers will terminate out of fear for the worst. However, even if it’s at the mild end of the spectrum it still requires a lot of support both emotionally, physically, and financially, which some mothers may feel they couldn’t handle. Even in this situation it is the mother’s choice; just like when it’s the mother’s choice when she doesn’t feel she could handle a “normal” baby. It’s really not that much different.
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March 21, 2007 at 2:47 pm · Filed under Online Health Care + Fetal & Pediatric Medicine + Blogging about blogging
Patient blogs are a way for patients to communicate to their friends and family and journaling can help them get through what may be a difficult experience. It can also benefit the hospital by offering self-generating patient stories that potential new patients can be directed towards.
From the Fetal Treatment Center’s website statistics, I know that we already have fetal treatment patients that blog about their experiences using various free blogging resources like blogger (I know because we get links from their blogs).
Caring Bridge - pros and cons
At the NACHRI conference, I talked with some people from Caring Bridge, which is a non-profit that offers blogging services for patients. Caring Bridge is a good service, but they have one fatal flaw: all the patient’s pages are automatically locked private. They can choose to give friends and family a password to see their posts, but they can’t choose to make any of their posts public.
Personally, I’d rather see the service offer the possibility for patients to choose make some of their story public. Without this feature, there is nothing for potential patients to read. Caring Bridge has a sponsorship package so that hospitals can pay to put their logo on their patient sites, but this is useless from a marketing perspective if the pages are all locked private. Supposedly, public post functionality is on the table, but it won’t be ready this year. Frankly, the ability to set a post to private or public is a common feature to most blogging services, so it really makes no sense for me to encourage patients to use Caring Bridge—as much as I’d like to support a non-profit like them.
The problems with hosting our own
I’d like to have a nice single solution to direct patients towards. We could host our own but that would require time and effort. Also, having it hosted here creates a rather strange legal situation. As the patient tells their story, they are also potentially letting out patient data. On any other blogging site this is fine, but if it is under our banner it creates a weird legal gray area in regards to HIPAA Compliance.
I will have to do some additional research to see if what the best solution is: a single interconnected solution that is easy for patients would be ideal. If anyone out there has any ideas let me know.
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March 21, 2007 at 2:11 pm · Filed under Online Health Care + Fetal & Pediatric Medicine + Blogging about blogging
After hearing the session on blogging at the NACHRI conference, I did some research into pediatric blogging. I found that there aren’t nearly the number of pediatric bloggers as there are neuroscience bloggers, but there are still some interesting sites out there:
Blogs targeted at patients
Blogs targeted at pediatricians or anyone who will listen
- Pediatric Grand Rounds - the archive of past editions of the Pediatric Grand Rounds, a bi-weekly collection of the best posts pertaining to the health of children.
- Blog, MD - a blog written by a third year fellow in a combined pediatric hematology/oncology and pediatric neuro-oncology program in the Northeast.
- Consider the Evidence: Med/Peds Journal Roundup - a blog written by a 5th year medical student (aka intern) about recent interesting medical journal articles
It’s a fascinating assortment of blogs, and there are more out there. PediaCast/PediaScribe seems like it is definitely a great resource for parents. I like Dr Raley’s personal touch and how he uses it to reach out directly to the patients he serves. For doctors, the Pediatric Grand Rounds seems like the best resource for recent news and research related to pediatric care.
It would be an interesting endeavor to have a blog written by a member of our staff at the Fetal Treatment Center or the Bay Area Pediatric Surgeons. However, that requires a measure of focus and time in their already busy schedules, so I don’t know how realistic that is. As a result, my main interest here at UCSF is working to facilitate patient blogging. I have a lot of thoughts surrounding that topic, which I will leave for my next post.
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March 21, 2007 at 2:04 pm · Filed under Online Health Care + Fetal & Pediatric Medicine + Blogging about blogging
As a medium, blogging lays somewhere between a newspaper article and Hamlet’s egocentric soliloquy. Over the past year or two, the wild interwebtube has become overrun blogs like some sort of bunny warren with burrows reaching to infinity. The variety of topics range from politics to cute puppys & kittens to science to “oh my gawd, you wouldn’t believe who I saw sally holding hands with!”
With the popular explosion of blogging, it’s not surprising that corporations and institutions have began to take interest in the phenomenon. Everyone wants to get on the bandwagon, but few know how to use this new medium, which is why most corporate blogs are just thinly disguised press releases.
Akron Children’s Foray Into Blogging
The medical industry has only just begun to experiment with blogging. At the NACHRI Conference, the Akron Children’s Hospital presented their two blogging experiments. Their first foray into blogging followed Ellen Kempf, M.D., director of the Oak Adoptive Health Center, on her educational journey to a Chinese orphanage. Their second blogging project followed 11 year old Meghan Frantz as she traveled to Washington, D.C. to talk with members of Congress about the challenges imposed on her younger brother Zack because he has cerebral palsy.
These projects were crafted to gain media attention for Akron Children’s and support political health advocacy efforts. Meghan’s blog was the most interesting, as it was a younger blogger and it was so targeted. It wasn’t an easy project: while Meghan wrote all the content she needed a lot of hand-holding for uploading the content and photos; also, the family required a lot of help traveling with Zack.
Blogging doesn’t always have to require so much extra support. In fact, the medium usually prides itself for being something anyone can do with a minimum of fuss. I still think their approach was good, but I was curious as to what else was out there. I did some research into other examples of pediatric blogging which I will detail in my next post.
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March 17, 2007 at 5:17 pm · Filed under Online Health Care + Fetal & Pediatric Medicine
I went to several sessions involving online health care and promotion at the NACHRI conference. It was really interesting to see what other hospitals are doing. As I have a lot to say, I’m going to break this up into multiple parts. Part one here is about Akron Children’s efforts with ORLive webcasting from the operating room. Other sessions will deal with the other sessions I went to including: incorporating blogging into your hospital site, hospital bedside interactive technology for education and entertainment, and ethnic media.
ORLive - webcasting from the operating room
Akron Children’s Hospital had a session on the live surgery video webcasts. Actually, they have a new webcast coming up on March 28th at 12:30pm entitled Horizontal Tenotomy: A Treatment for Congenital Nystagmus and if you miss it you can check their archives.
Their purpose behind the webcasts was to increase the image of Akron Children’s as a high tech institution and increase media exposure. Being so close to Rainbow Children’s. At $38k per webcast it seems like a high price to pay, but they have indications that they are getting results. They had a fairly high number of visitors, and more importantly they showed a large increase in ablation surgeries after they had a webcast ablation surgery. Of course it’s hard to disentangle these results from their other PR efforts. Still they seem to have accomplished what they wanted to get out of it, and it sure looks good on the front-page of their website. Speaking of which, they have a nicely redesigned site—I wish UCSF Children’s Hospital site was that nice looking and clear.
I don’t really see us at the Fetal Treatment Center doing webcasts. Personally, I think our short targeted educational videos are more effective since they are directly and quickly answering the questions that patient’s tend to ask. In contrast, their one hour long webcasts are more like tv programs that you have to set time aside to watch with no table of contents for skipping around. Supposedly they average a watch time of 20min, which I find amazing and a bit suspect with your typical new media short attention span. This feeling of television pervades the webcast medium as once it gets tossed in archives it feels old and sorta no longer useful.
Still webcasts and other longer videos have their place on the web. It might make sense to include some of our longer video productions online, which is something I should put some thought into.
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March 14, 2007 at 7:30 pm · Filed under Minds, Brains, & inbetween + Fetal & Pediatric Medicine
The tour presentation went exceedingly well with rave reviews—though frankly it’s hard for it not to with Dr. Harrison, the “Father of Fetal Surgery” giving the talk. It was filmed too which is excellent, and I’ll endeavor to link to it once it’s edited and online.
The main point of Dr. Harrison’s talk was how intrinsic fetal diagnosis and therapy is going to be for the future of medicine. Currently, most people think of fetal treatment solely as the surgical treatment of birth defects. However, as neonatal diagnosis improves, we will be able to diagnose more and more childhood diseases before birth. As a result, this opens the door for potentially starting treatment in utero using stem cells, gene therapy, and other minimally invasive treatments. There is research going on right now into treating sickle cell anemia before birth, and there is hope that various autoimmune disorders might be able to be treated this way.
Even more radical is the evidence that many adult diseases, such as heart disease and diabetes, may be triggered initially not just by your genes but also by your placental environment. Thus, it may be possible to detect and hopefully prevent some adult diseases through monitoring for adverse in utero conditions or potentially some form of fetal treatment.
The effect of maternal stress on the fetal brain is actually a hot topic in neuroscience. Some studies (1, 2) point towards it being a predictor for depression, schizophrenia, ADHD, learning disabilities, you name it. And other studies (3) indicate that mild to moderate material stress might actually have a beneficial effect on fetal development. Of course, it’s also hard to tease apart the genetic component: does the child have a cortisol sensitivity due to increased cortisal levels in the fetal environment or does the child just have the same stress sensitive genes as the mother?
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