Cerebral Palsy statistics (edited: Buh-Wha?! answred. GRAH! remains)

[capri0mni]

(I'll cross-posting this to disability and no_pity)

Been looking for some hard numbers, because I've had this idea for a series of "Statement" tee-shirts, protesting the wording of commonly quoted stats relating to "Developmental Disabilities" (Autism, Cerebral Palsy, Down Syndrome), and I thought I'd start with C.P., since that's the shirt I'd wear.

I found one site which is (relatively) non-rage-inducing, because it's not as scare-talking as the doctor and lawyer-sponsored sites: My Child Without Limits.

Here's the paragraph I found on C.P. Stats:

(quote) It is estimated that two out of every 1,000 newborn children will develop cerebral palsy. And approximately 40% of those born with cerebral palsy will have a severe case. Right now, about 10,000 babies and infants are diagnosed with the condition each year. In 2002, the number of cerebral palsy cases in 8-year-old children was found to be one in 278. It is the most common motor disorder in children and is second only to autism as the most common disability in children.(unquote)

Okay, that first stat I've seen left, right, and center (though saying "2 out of 1,000" is clunkier than "1 in 500"). But how does it almost double between infants eight-year-old kids?

I mean, if people who develop C.P. tend to be born prematurely, and may have other health problems trailing along behind that, I'd suspect the rate of kids surviving with C.P. between infancy and age 8 to go down.

Unless... Technically, C.P. can start anywhere between in-utero to age four. In developed countries (like the U.S. and Britain), 90% of kids with C.P. get it either in the womb, or during birth. And the remaining 10% get it later, due to brain injury or infection. So, in privileged nations, the number of cases of C.P. among school-aged kids might go up a smidge, but not double. Of course that second number may be counting kids worldwide, in places where those stats may be reversed, because they don't have vaccines to protect against meningitis and the like. Another explanation could be that there are cases where the C.P. is mild enough that it's not given a name until years later.

But however you look at it, isn't that first oft-quoted stat just plain, whopping, off the mark? I mean, whether or not it's recognized during between birth and four years, it's still there. Can't the doctors and demographers (or whoever comes up with these stats) just say: "We thought it was 1 in 500... but it turns out to be a lot more common than that."?

And, while we're at it: what does "40% of those born with C.P. will have a severe case" mean? Define 'severe,' please. Is that: 'Can't walk without equipment'? 'Can't eat without help?' 'Anyone on the street can see there's something wrong with them?' Which is it?

Anyway, the design I was thinking of will state something along these lines:

"One in X infants will have Y-condition -- Means: One in X adults live with Y-Condition. (We are among you! Ooooo!)" ... Spoofing the old sci-fi horror flicks.

But now, I'm not sure which numbers to use.

My "Grah!" is the perennial sort: Why are we only talked about as infants and children? Why are all the sites on information and support groups aimed at our parents and teachers?

nightengalesknd, who happens to be a pediatrician with C.P., answered both questions over in no_pity.

As for "Which number should I use?" she helpfully looked it up in a professional pediatrics text that she has online access to (it's the second number: 1:278). And then, she helpfully linked to the webpage of the C.D.C. (Centers for Disease Control) where the survey methods were explained.

Once there, I started hopping around the site looking for info on C.P. on my own, and this is what I discovered:

The most recent, most easily-accessed, cerebral palsy statistics report on the site is from 1988. And that report said the ratio of children with C.P. to children without C.P. was 23:10,000 (roughly 2:1,000)

These numbers were determined after surveying children in public classrooms that were local to the C.D.C.'s offices.

The number from the pediatrics textbook was reached via a survey conducted between 2000 and 2003, and that number was reached by interviewing people at home, asking who lives there.

Well! That explains why the second number is nearly double: I've known parents of kids with C.P. who opt for homeschooling (or give it serious consideration), because the standardized, cookie-cutter educational system can't teach kids with ideosyncratic communication styles. And if all you're doing is surveying the local classrooms, you're going to miss that a wide swath of the population.

But is that more recent, more accurate, number visable anywhere on the opening information pages about Cerebral Palsy? Nope. So it's that lower number that gets quoted all over the place. And because it's quoted most often, it's assumed to be the most accurate (that's what I was going to do).

As for "Define 'Severe,' please" nightengalesknd wrote this:

(Quote)
The "40% are severe" thing, I dunno. I'd have to do some more hunting through the literature to get good estimates. As far as definitions, I've heard classification schemes of mild, moderate and severe that are kind of sort of quasi-standardized, and there's also a reasonable classification system called the the Gross Motor Function Classification System (GMFCS), which has five levels of severity.

LEVEL I - Walks without Limitations
LEVEL II - Walks with Limitations
LEVEL III - Walks Using a Hand-Held Mobility Device
LEVEL IV - Self-Mobility with Limitations; May Use Powered Mobility
LEVEL V - Transported in a Manual Wheelchair
(Unquote)

And I note that the difference between Levels IV and V may have more to do with wealth and access to "Powered Mobility" than any actual difference in physical condition.

Oh, and as much an improvement as the home survey over the public classroom survey is, it was still phrased in terms of asking parents if they were caring for children with cerebral palsy. ... Not asking if parents with C.P. were raising able-bodied kids.

Comments

[spiralsheep]

My "Grah!" is the perennial sort: Why are we only talked about as infants and children? Why are all the sites on information and support groups aimed at our parents and teachers?

This ↑

[capri0mni]

Heh. One of the regular people over at no_pity is a pediatrician who happens to have CP (she wasn't diagnosed until she was adult), and she once commented that she sees herself as an Inside Agent, working to convince her colleagues that she exists.

*snerk*

[spiralsheep]

Heh.

The longest running disability issues programme in Britain, 1977-98, was called "Does He Take Sugar" because of the ways many people speak to companions of disabled people instead of just talking to the disabled person with the assumption that they and their companions will know if the disabled person can't answer and needs an advocate or interpreter. T'interwebz must've come as a shock to people who prefer to think of disabled people as physically/emotionally/mentally isolated from wider communities.

[capri0mni]

*snerk*

The facial expressions on restaurant waitstaff, when they'd ask my mother if I want milk, and I'd pipe up with: "Actually -- Do you have ginger ale?" was priceless.

The Temporarily-Able-Bodied: longest running inside joke among the crips. And the poor dears don't even know it.

tsk.