Diff'rent Looks

May 15 2012 Published by under Kidney Function

The first time I thought about pediatric kidney disease occurred my senior year of high school. That fall Diff'rent Strokes debuted, introducing Gary Coleman as Arnold Jackson, a precocious, wise-cracking 7-year-old from Harlem.

Pediatric kidney disease, 1978

Arnold sometimes seemed wise beyond his years. Of course, he was being played by 10-year-old Gary Coleman who looked far younger than his chronological age. Thanks to focal segmental glomerulosclerosis (FSGS), a particularly nasty form of childhood nephrotic syndrome, and attempts to treat it, Gary's growth was stunted. His adult height measured 4 feet 7 inches, so he could play much younger characters...up to a point. He received two kidney transplants, both of which failed due to recurrent kidney disease.

The entire child cast of the show subsequently led troubled lives. Gary Coleman died in 2010 of a brain hemorrhage.

This week the face of pediatric kidney failure changed when Sarah Hyland, the older sister on Modern Family, revealed that she has lived with chronic kidney disease her entire 20 years of life. She recently received a kidney transplant from her father during the show's summer filming hiatus. 

Pediatric kidney disease, 2012

Lucky for Sarah, she had a much different condition called dysplasia. During development, her kidneys failed to form enough normal tissue to support her throughout her life. Doctors diagnosed her slowly-progressive condition at 9 years of age. She never received the high-dose steroids that gave Gary Coleman his round face. She benefited from decades of research that dramatically improved the ways we manage the growth failure and bone disorders that can accompany all kidney diseases. She will likely have excellent function from her father's kidney for many years without the appearance-altering side effects of earlier anti-rejection drugs.

We have made a lot of progress, but we need to make more. FSGS has some new treatments, but many patients still fail to respond and develop permanent kidney failure. FSGS still recurs in the transplant, killing the new kidney as it did the native ones. Dysplasia does not develop in the transplant, but other conditions may shorten the life of the replacement kidney. The side effects of anti-rejection drugs may be less visible, but their risks of infection, diabetes, and cancer still raise problems. We still have a lot of research to do.

But in my lifetime, look at the progress we have made!

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Competing Forces in Medical Care

Dec 01 2011 Published by under Life of a Physician

My November travels took me to the Scientific Sessions for the American Society of Nephrology, a huge gathering of we kidney specialists. As I enjoyed an adult beverage with colleagues from across the country, we began comparing notes about our clinical services. We all hear that we fail to see enough patients!

So how do we determine "enough" for physicians? In private practice you fill your clinics. When the load overwhelms the group, a new doctor can be hired. In academia, where our jobs include teaching, research, and administration, the standard is more difficult to determine. One tactic involves Relative Value Units (RVUs) for physician work.

When you see your doctor, s/he bills a level of service that translates to the amount of reimbursement. That level of service can be translated into the sum of several RVUs for Physician Work, Practice Expense, and Professional Liability. The monetary value of each of these gets adjusted by region, and the final value factor varies over time and by payor. (More on Medicare and RVUs can be found here.) Productivity benchmarks for each specialty are generated annually (Medical Group Management Association, for example, publishes standards). Most academic departments expect a full-time clinician-teacher to generate physician work RVUs at the 75th percentile. Roughly one-quarter of a physician's time will be taken up with trainees. The percentile can be adjusted by job expectations in other ways. Someone with 75% of their time protected for research should only be expected to generate one-quarter of the 75th percentile under this model.

So the bean-counters in our departments look at our numbers and tell us we aren't meeting national standards, but none of us know who they are auditing to determine these numbers! Unlike in adults, pediatric kidney disease has a relatively stable prevalence in the population. Many of us exist in sections that provide the only service in our specialty for a state or multi-state region, so we do not have competition from whom to "steal" patients.

So where do we get these additional patients?

Some centers develop new services. Kidney doctors run blood through filters all the time. Buy a machine with a different filter and we can do plasmapheresis. Of course, that means someone else in our center no longer does those patients; this approach is often a zero-sum game. No, the answer much of the time would be to see patients we might otherwise not see.

For example, asymptomatic microscopic hematuria (blood in the urine not visible to the naked eye) is a common pediatric problem. The typical work-up involves a number of tests. If normal, we just watch blood, urine, and blood pressure over time. Primary care physicians could handle this condition with phone support from us. At this time, our inclination is to see all patients referred to us, rather than doing this level of triage for which we receive no RVUs and no payment.

We have two competing forces here. One involves running our clinics like a business, with carrots and sticks for meeting productivity standards and bringing in the bucks. However, this occurs at a time when there should be even more pressure to avoid unnecessary visits to specialists to keep everyone's costs down - but there is no financial incentive for that.

I do not have an answer. Clearly, current capitalist forces are not going to fix our "system."

 

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Criminal Behavior

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Office stocking has proceeded to the point where I can catch up on some reading. Science from August 19 includes a special section devoted to Investing in Early Education. The ten articles present compelling data regarding the efficacy of preschool. By the 1980s early education had enough documented benefits that randomized controlled trials were deemed impossible (because parents would refuse to be in the control group) or unethical (because effective "therapies" would be withheld), leading to a case-control design for the first large longitudinal study.

I encourage you to read the whole section; it's worth it, even if  you have to pay!

The first article in particular asks a major question: why isn't early education offered to all children who need it, given its documented benefits? Three long-running studies are reviewed, all of which demonstrate significant benefits well into adult life (see figure).

Click to enlarge

HighScope/Perry first demonstrated the benefits of early learning in 123 students with a return on investment of $16 for every dollar spent. The intervention cost almost $18,000 per student for half-day attendance during the school year. Subsequently, the Abecedarian study also used a randomized control design from age 6 weeks to 5 years with full-day year round classes. Costs rose appreciably to just over $70,000 per subject; ROI dropped to $2.5 per dollar invested.

The Chicago study did not boast a randomized design, but did involve 1,539 students at a cost of only $8,224 per student for half-day, school year programs. Each dollar spent produced $10 of benefits over time. Sounds like this one hit a sweet spot in terms of "bang for the buck."

What benefits are we measuring? Graduating from high school, better employment, and lower incarceration rates. All of these factors also correlate with better health.

So why don't we have universal preschool, at least for high risk children? We have lots of data showing benefit and excellent ROI for society! A variety of issues come into play.

The nature of "at risk children" changes over time. At present, many more immigrant, English-as-second-language children are in the US than in these earlier studies. Will similar programs translate to these youth? Only time and tracking will tell. While I tend to err on the side of intervention (I mean, do we really think it would hurt?), those who control the funds often come out on the other end of the equation (we can do nothing till we know what works!). Now we also must contend with those who believe only stay-at-home-mommies are the answer. Which brings us to politics.

And that's the real issue. Children do not vote. These programs primarily help bridge the gap between advantaged and disadvantaged kids; those who fund political campaigns generally do not look for this sort of extremely long-term return on investment. Even though we would all be better off with better educated, skilled workers who stay out of jail (thus providing the labor force and tax base we need for our society and economy to thrive), many in the US consider this unnecessary spending.

If we withheld a treatment this effective in the practice of medicine, it would be criminal.

One could argue the same in this situation.

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Biomedical Blogging

Jul 27 2011 Published by under Uncategorized

For those of you looking for words of wisdom about the golden fluid, I posted over at Stream of Thought about a couple of articles from the July 21 NEJM on urinary tract infections in children. These pieces illustrate the muddled mess that is our current approach to this problem. My take will give you a quick summary; follow the links to the original articles for an in-depth look at these issues.

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Must Read Now: Budget Cuts and Children

Apr 28 2011 Published by under Politics

Click for Source

Today's issue of the New England Journal of Medicine includes an editorial from George J. Annas and Wendy K. Mariner, preeminent bioethicists at the Boston University School of Public Health (home of the Fighting Terriers):

 

Women and Children Last - The Predictable Effects of Proposed Federal Funding Cuts. N Engl J Med 364:17, 2011  (10.1056/NEJMp1102915)

The authors examine proposed cuts in the House budget bill, including elimination of Title X clinics, federal funding of Planned Parenthood, 10% cuts to the supplementary nutrition program for women, infants, and children (WIC), and $50 million cuts from prenatal care for low-income women and health care for poor children. The whole piece runs less than 2 printed pages, including references, so you should read it all here. I have selected some quotes to make you click on through:

The amounts of money saved by these cuts would be trivial, but the damage to the health of low-income women and children — especially from the loss of direct federal funding for food and preventive health care — could be devastating. The proposed cuts are simply cruel.

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Planned Parenthood clinics spend approximately 3% of their budgets on abortion services. (An antiabortion budget cutter could thus justify reducing the organization's federal funding by 3%, but no more — unless the cut was meant to be punitive.)

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Two years ago, before the current debate over ACA funding, a Guttmacher Institute study concluded that eliminating Title X clinics (and Medicaid funding for contraception counseling) would result in an additional 860,000 unintended pregnancies and 810,000 abortions per year among low-income women. The study also found that from a strictly budgetary perspective, helping low-income women prevent pregnancies saved almost $4 for every $1 spent. Rational policymakers who oppose abortion and support fiscal restraint should thus also support current federal efforts to reduce unplanned pregnancies.

 

So these proposed cuts are trivial, cruel, and punitive. They primarily affect a group with little political influence, poor women and their children, but they allow some politicians to strut "pro-life" credentials. Pro-life? Cutting services to prevent pregnancy will result in more pregnancies, but once pregnant, prenatal care and postnatal support will also be less available for these low-income women and their children.

Pro-life, my ass.

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My Grandma's Cure-All

Feb 02 2011 Published by under Journal Club

The Magic of Windex (Click for Source)

Back in 2002 when My Big Fat Greek Wedding hit the theaters, audiences learned about Chicago's Greek community and the healing powers of Windex. My parents laughed, because their parents also had a magical remedy for everything: Vicks Vaporub.

Having a cough or cold meant a thick layer of the mystical ointment on your chest and neck, with a towel tucked around to hold in the heat, although I cannot completely rule-out an anti-sheet-staining effect. Family lore includes the night my maternal grandmother stubbed her toe, eventually found to be broken. Her husband, the pharmacist, told her to put some Vicks on it. Such healing powers!

As time went on, we grew up and moved onto other remedies for our colds (like Nyquil, another product from the Vicks' people). Proper clinical studies showed more risk than benefit from many of hese drugs in young children. What should tired, cranky parents with sick, cranky children do?

Vapor Rub, Petrolatum, and No Treatment for Children With Nocturnal Cough and Cold Symptoms.
Paul et al. Pediatrics 2010: 126

The authors did a trial comparing VapoRub, its petrolatum base, and no treatment in children seeking treatment for cough and cold symptoms. Children could not have used topical or systemic cold remedies (including honey!) the night before. A validated symptom survey was administered after obtaining informed consent; the parents completed it again the night after the test treatment.

The most creative part of the study involved participant blinding. Investigators gave parents an opaque bag containing a glass specimen cup filled with the assigned treatment, so the treating physician remained masked to study group. At bedtime, parents opened the bag and found either an empty cup or a grease-filled cup. Parents in the no treatment group obviously knew their assignment. Those who found ointment also has a small packet of VapoRub to apply under their nose before massaging the treatment onto their child. The investigators hoped this would mask the treatment from parents. Even with all of these efforts, more than 80% of parents in each of the ointment groups correctly identified the treatment assigned to their child.

So what happened? All measures of symptoms significantly improved with the VapoRub. Of course, symptom relief came with side effects including mild skin irritation. No neurologic issues arose, a particular concern with camphor-containing agents. The authors conclude that topical VapoRub may be helpful for improving cough and cold symptoms in children at least 2 years of age.

Vicks VapoRub is more than my grandparents' placebo; it is evidence-based medicine!

Click for Source

What will be next - Windex for acne?

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A Very Good Cause and Shameless Self Interest

Jan 27 2011 Published by under Denver the Wondercat, [Medicine&Pharma]

One of my very first blog posts featured Denver the Wondercat*, our pet from 1991-2009. We adopted this gentle giant from the St. Louis County Animal Shelter on my daughter's 4th birthday in 1991. He refused to be an outdoor cat, ignoring all of our plans, and lived a sheltered, pampered life in Kirkwood, MO, and Omaha, NE.

Denver the Wondercat, 1991-2009

In 2008 he became my favorite patient when his vet diagnosed stage III chronic kidney disease. From that day forward he received daily potassium supplements, moist cat food, and subcutaneous fluid boluses several times each week. These treatments won us no immediate love or gratitude from the animal, and they added up to $40 per month; however, he had a good quality of life for another 18 months. The average survival time for a cat with stage III disease is 6 months.

As a pediatric nephrologist, I take care of kids with chronic kidney disease. They, too, have to take yucky medications and uncomfortable shots that win me no love or gratitude. They did enjoy hearing about my cat and his struggles with a special diet and various treatments. I learned the lesson that many before me discovered: children will listen to a talking animal faster than a knowledgeable adult!

After Denver's demise, I decided to write a book for children about his life with chronic kidney disease. Are there a lot of children with this condition? According to the US Renal Data System, approximately 1,300 children are diagnosed with permanent kidney failure in the US each year; an equal or larger number are diagnosed with chronic kidney disease. Approximately 110,000 adults start treatment for kidney failure every year, and at least that many more are diagnosed with chronic kidney disease. These adult patients are likely to have children or grandchildren who would benefit from a kid-friendly discussion of these topics. Finally, according to the Pet Food Institute, over 80,000,000 pet cats live in the US, and kidney disease will be the most common cause of death for these felines. So far no takers on my proposal, but I keep plugging away looking for an agent and publisher**.

If you follow this blog regularly, you also know that my family hails from Missouri and we often attend Missouri Tiger sports events. Big cats, so sleek and powerful, are a favorite venue at the zoo. When I heard about National Geographic's new campaign to raise funds for big cat research, I had to participate!

Little Kitties for Big Cats is a gallery of pet photos. A minimum donation of $5 will get your favorite feline into the gallery where others can tweet it, like it, and donate to it.

Of course, I donated and uploaded Denver the Wondercat. Denver loved to curl up in a lap while we watched Tiger sports, even though he sometimes got dumped out during exciting plays. We know he would want to keep his wild brethren safe and happy as he was for 18 years, even though he didn't choose "the wild outdoor life."

So click here to see Denver in the online gallery. Please tweet it and like it and consider donating; National Geographic wants to raise $10,000 and, so far, they have $2,000. After all, it is in the name of Science!

*Why was he a wondercat? My husband considered himself a "dog person," but our firstborn could not be persuaded to want a puppy. Shortly after Denver's death, my husband missed having a cat so much that we adopted again! Denver turned my spouse into a "cat person," a truly miraculous feat to those who knew him well.

**Of course if you are an agent or publisher with an interest in this manuscript, I would love to chat more with you! Drop me a line at pascalelane at gmail dot com.

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What I Am Reading

Jan 20 2011 Published by under What I'm Reading

The title of this post should be in past tense, because I finished Seth Mnookin's wonderful book, The Panic Virus, during my airport adventures. I recently blogged about meningitis in an unvaccinated child, and this book begins with a more serious version of this infection, epiglottitis.


This tome documents the anti-vaccine movement, from it's early days of cowpox through the present. Much will be familiar to those watching the news. Over the past few weeks, reports of the withdrawal of the Wakefield paper and the Kennedy Salon article detailed the bad science and conflict of interest that drove many parents to withhold their children's shots.

Mnookin weaves the compelling story, and I can do no better here. My observation regards the irony of the situation. The anti-vaccine folks claim that the government and big Pharma run a conspiracy that has duped us ( parents and doctors, I'm both, after all) into endangering our children for their profit. Instead, it would appear that the conspiracy drivers were Wakefield and some trial lawyers willing to put much of society, especially it's weakest members, at risk for profit.

None of this appears to budge the beliefs of the most fervent followers of the movement. I am glad that shoddy tainted science has been withdrawn from the official published record. Perhaps one day fact will triumph over fantasy. As someone who has seen children critically, even fatally, ill with preventable diseases, that is a day of which I dream.

- Posted using BlogPress from my iPad

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Random, Wandering Thoughts

Jan 10 2011 Published by under [Etc]

I may have been the last person to hear about the Giffords shooting on Saturday.

We took off early that morning to move my first-born to a city about 3 hours down the road. She has a paid internship with a major communications firm, and both parents, her strong, 18-year-old brother, and the doting maternal grandparents drove most of her stuff to the new digs. I would say all of her stuff, but I have found forgotten items since returning home. We then took her out to buy other stuff to furnish the studio apartment, and I finally checked my twitter feed.

Wow! Eventually, I whipped out my iPad, and CNN provided the background info I was missing. I have been to Tucson a few times, and I have friends who live in that part of town. At least the school shooting in Omaha no longer dominates national news. Both incidents make me wonder when the US will turn away from gun culture and enact some common-sense control, although I am not exactly optimistic. The Tea Party seems to favor arming the public like the cast of a vintage John Wayne movie.

At this moment, I watch large, fluffy flakes of snow drifting past my 6th story window. Traffic moves briskly on Dodge to my north, but the snow keeps falling. Omaha has not suffered a blizzard or major storm this winter, so my mood remains better than last year. I find it a bit depressing that snow just started in Raleigh-Durham, site of Science Online later this week. I really hoped the meeting would be a winter reprieve.

Somewhere between the news, the move, and the snow, my will to blog got lost.

I will end with a summary of our bittersweet parting with the eldest sprog. When we drove her to college in 2006 (in another time zone, originally) we all cried. She then transferred to a school in Omaha. Although she had her own apartment, we saw her every week or so for the past 3 years. While I will miss her, I know that this is where she needs to be right now. She needs to find her own strength and her own way in the world. We have done what we can to teach her about life. She has a college degree and no debt, the best start we could give her. I know she will do well. No tears for me this time.

Next August we will drive our "baby" to university. I am saving my tears for that trip.

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Log On, Drop In, and Participate

Oct 20 2010 Published by under Feminist Musings, Travel

Eppley Airfield (from Wikipedia Commons)

Today I travel, so once again I am blogging from Eppley Airfield in Omaha. I dragged my ample butt out of bed at 4 am so I could be in Philadelphia for the kick-off of Vision2020 tonight. A couple of days ago  I blogged about how social media savvy this group appeared; they have now added information on other platforms through which you can follow the action in the eastern time zone here.

I will also be blogging and tweeting from the event. While they have selected delegates to travel to the conference and plan projects to further gender equality, this extravaganza is for all women, not just those on site. You have ample opportunity (via social media) to put in your own thoughts. I have not yet settled on my project, which could fall into healthcare or STEM categories. Perhaps I will figure out a way to make it fit with both, like my career!

In the meantime, consider signing up to help a classroom or two via my Donors Choose page (link in right column). Your contribution, no matter how small, will build with others to provide critical educational opportunities. Who knows - a kid in the classroom may be the next Marie Curie!

I have to fly to Philadelphia and get all feminist for a few days. Stay tuned!

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