Children at risk identified, but who follows up?

Since 1998, West Virginia University’s CARDIAC program  has identified thousands of West Virginia fifth-graders with very high blood pressure, risky cholesterol and obesity – early warning signs of diabetes, heart disease, and stroke – but no state agency has ever followed up on those children.

“You can do all that screening, and you can send a letter, and then it can still not work because nobody talked with the parents,” says Lincoln County school nurse Pam Dice. | Kate Long photo for Charleston Gazette

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Side story to preceding story.

By Kate Long | February 11, 2012 | The Charleston Gazette

CHARLESTON, W.Va. — Every year, for 12 years, Lincoln County school nurse Pam Dice sat down and telephoned parents of kids who had what she calls “dangerous numbers.”

Each year, after West Virginia University’s CARDIAC project screens schoolchildren, they send school nurses a list of results. Dice always went through her list, looking for kids with high numbers.

Each year since 1998, CARDIAC has found that one in four West Virginia fifth-graders has very high blood pressure, risky cholesterol and obesity. Those are early warning signs of future diabetes, heart disease, and stroke, Dice knew.

In Lincoln County, last year, 34 percent of children screened had high blood pressure and 28 percent were obese. “They showed us which kids need attention,” she said, “so I picked up the ball.

“Nobody told me I had to do it,” said Dice, who retired this year. No state agency has ever asked its employees to follow up on the children at risk. “But I knew some kids wouldn’t make it to a doctor if I didn’t.”

Dice called a few parents at a time. She knew CARDIAC had sent them a letter, telling them their child’s results, advising them to take their child and the letter to their doctor for advice.

“But people get all kinds of things in the mail, and they don’t know the people who sent that letter, and I felt like somebody local needed to call, too.

Pam Dice

“I know for a fact that a lot of kids made it to the doctor because of those calls, so it was time well spent,” she said.

What did she say? “Nothing complicated,” she said. “I just asked if they had questions, then mostly listened. Lots of people just needed to hear that I thought they should pay attention to the letter.”

The letter lists a toll-free number parents could call with questions. “But some people hesitate to call someone they don’t know.”

Sometimes parents hadn’t read the letter, she said. “Some couldn’t read it. And there’s some who’ve got other troubles, things on their mind, drugs or mortgages or something else, and maybe they threw it in the trash or laid it down without reading it.

“I’d just tell them what the letter said, and we’d go from there.

“Most wanted to do something, once they understood they could save their child a lot of trouble down the road. People want the best for their kids.

“Nothing takes the place of a conversation,” she said. “You can do all that screening, and you can send a letter, and then it can still not work because nobody talked with the parents.”

Today’s young adults

The first children screened by the CARDIAC program turned 23 years old in 2011.

How are they doing? If they had dangerous numbers, did their parents take them to the doctor?

Nobody knows.

Individual nurses like Pam Dice followed up. Nobody knows how many others did the same. They were not asked to contact parents to see if they had questions.

Every year, lawmakers wrestle with the state’s mushrooming high chronic disease bills. They have been warned that those costs will double between 2008 and 2018 if the state does not find a way to reduce the number of people developing diabetes

But in 13 years of CARDIAC, no state or regional agency has systematically followed up on thousands of children identified as at risk, as a way of lowering the state’s diabetes numbers.

“We should be following up in some way on the CARDIAC results,” said Delegate Don Perdue, chairman of the House Health and Human Services Committee. It’s a chance to save children and their families a lot of expense, he said, and “probably would have saved the state millions of dollars in the future.

“We’ve been warned that our health care expenses could at least double if we don’t lower the percent of people who have chronic disease,” said Perdue, a Democrat and a Wayne County pharmacist. “Once the alarm bell has rung, the house is on fire, and you need to be putting it out. But we are not good at prevention.”

Whose responsibility?

The state-funded CARDIAC program is finishing its 13th year in the schools. This spring, CARDIAC will send the schools new lists of children who have early warning signs of chronic disease. No systematic response is planned.

“It’s a lot harder to organize a follow-up than it might sound,” said Joe Barker, director of state Office of Community Health Systems. “Whose responsibility would it be? Therein lies the problem.”

“School nurses would like to follow up on those children, but they are already overwhelmed with kids who are already diagnosed with asthma, seizure disorders and insulin-dependent diabetes and behavior disorders,” said Becky King, coordinator in the state Office of Healthy Schools.

Nurses are also responsible for dealing with STDs, pregnant teenagers, kids on drugs, and kids with HIV, she said. To do more, she said, nurses need more troops.

Can local health departments help? Only three have full-time directors, Barker said. The rest are tiny, independent entities, so no central body can order them to “do this, across the state.”

Melanie Purkey, director of the state Office of Healthy Schools, said that, with limited personnel, the school system is trying to improve the health of all children instead of following up on specific at-risk children.

The schools have managed to get soda pop and junk food out of vending machines, she said. The Department has launched statewide efforts to improve school lunches and increase physical activity. “Those things will help all children,” she said.

“We feel specific children should be treated in their medical homes,” she said. All kindergartners now must have physical exams before they enter kindergarten, as a means of requiring parents to establish a “medical home” for the children.

The Bureau of Public Health also does not have resources to organize a statewide contact-the-parents effort, Barker said. The state Diabetes Prevention Program has only three staffers to cover the whole state.

“No one agency is equipped to follow up on these kids,” Barker said. “Obviously, somebody should, but everyone’s pretty overwhelmed, understaffed, and under-resourced.”

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