A crib-to-college study

[Max]

A crib-to-college study
Endocrinologist Margaret Lawson, who usually moves at top speed, knows it will take years to find out if her work will improve the lives of children with diabetes. She's prepared to wait, she tells Gare Joyce.

Gare Joyce
The Ottawa Citizen


Monday, July 01, 2002

The Ottawa Citizen
Little Kimberly Inuya Qammaniq waits patiently as her mother, Wanda Qammaniq, talks with her doctor, Margaret Lawson, head of pediatric endocrinology at CHEO.


The Ottawa Citizen
Kids are a volatile test group, says Dr. Margaret Lawson, who studies childhood diabetes. 'They go through growth spurts, body changes, puberty and emotional changes. You're depending on their memory and counting on their willingness to take the time it requires to gather the necessary information.'


Those who work with Dr. Margaret Lawson get used to her pace and rhythm. They have to.

She talks like she's on fast forward. She wheels around her office frenetically, making it only a slightly less dangerous work environment for her colleagues than the pits at a stock-car track.

She admits being "impatient about getting things done" and has gone about her life trying to get in a day's work before lunch. The best measure of this was her ability to condense what should have been six months of rehabilitation for a spinal-cord injury into three weeks back in her med-school days.

Yet Dr. Lawson, head of pediatric endocrinology for the Children's Hospital of Eastern Ontario, has invested her professional life in a field that takes years, even generations, to show results.

Dr. Lawson and her CHEO team are tracking the lives of a group of young people from the Ottawa area literally from the crib to college. They are investing years, decades, a large part of their lives, in science and medicine, in finding a way to better treat childhood diabetes.

And while her published research has already revised the conventional wisdom about treatment of the disease, she acknowledges that the results don't come in by lunch -- or even by the end of adolescence.

"We might see signs that we're on the right track years down the line, but it's worth the work and the wait," says Dr. Lawson, who gives the impression that this is the one thing for which she's prepared to wait.

Childhood and juvenile diabetes (Type 1 or insulin-dependent) affects one out of 300 children. Children and adolescents with Type 1 diabetes number 7,000 in Ontario; nationwide they represent about 15 per cent of the diabetic population. According to Dr. Lawson, she sees 80 to 100 new pediatric patients in a given year and 95 per cent have Type 1 diabetes.

"What we're trying to do is improve the prospects and quality of life for these children over the long term," she says.

Historically, the statistics have painted a potentially bleak picture. Compared to children who have normal pancreatic function, children with diabetes are 25 times as likely to go blind, 12 times more likely to develop kidney disease, five times as likely to suffer gangrene in their extremities and undergo amputation, and twice as likely to suffer heart disease.

"I'm sure with the work that we're doing and the progress that has already been made we'll see those numbers drop," says Dr. Lawson.

Any progress in treatment of childhood diabetes that could significantly lower those numbers would also take a burden off the health care system. One-seventh of all public health care spending goes to treating patients whose conditions result from, or are exacerbated by, diabetes.

Just as the benefits are wide-ranging, so too are the demands on Dr. Lawson and her research team. "It's behaviour and medicine combined, psychology and endocrinology rolled into one," she explains. "We're looking to see which patients fare the best in controlling their diabetes over the short term and over the long term. And we're looking to see what are indicators of the prospect for success and what are warning signs or red flags for trouble. It can be anything from the number of injections a day to the number of times the families of the patients call or come into the clinic."

The findings from the CHEO research team are often surprising. "We've looked to demonstrate something we expect to be true, we come back with results that we didn't anticipate," Dr. Lawson said.

For instance, it would have been easy to presume that children would likely benefit from the experiences of a parent who has diabetes -- that the parent would be able to pass on his or her knowledge of the disease.

We found that the children of a diabetic parent tended to do not as well controlling their blood sugar as the kids whose parents do not have diabetes, Dr. Lawson said.

"That really goes against our expectations and we're trying to determine exactly what the cause is."

Dr. Lawson's team has also determined that children tended to control their diabetes as effectively over the long term with two daily insulin injections, rather than three, which has been the standard that many medical centres have adopted.

"With new patients we started them on a two-injection program and contrasted their results with those injecting three times," she said. "One of the great problems that we have with the children is the anger and resentment that they can feel about their diabetes. They often rebel against it. If we can make the control easier for them or less invasive for them early on their lives then we're very likely to see benefits later on -- emotionally and medically.

"You might think that one injection a day isn't a big difference, but when you think of it from the child's point of view -- almost 400 less injections a year -- it's an enormous improvement."

The most encouraging research to come out of Dr. Lawson's clinic focuses on the most significant advance in the treatment of diabetes in recent years, the insulin pump, an innovation that allows patients to put aside their hypodermic needles. The battery-operated pump delivers a regulated stream of fast-acting insulin through a catheter, usually into the abdomen. It can be programmed to vary rates according to the child's needs, usually a higher dosage in the morning, tapering slightly later in the day.

"We're finding that those who use the insulin pump over time do a better job of controlling their blood sugar and hemoglobin counts," Dr. Lawson said. "It also offers them a better quality of life. It's not quite complete approval, but out of the first 95 or so children who we put on the insulin pump only four decided to go back to injections."

"I definitely preferred using the pump rather than injecting," said student Jeff Herbert, who recently finished four years in Dr. Lawson's program at CHEO. "It was a little frustrating in the beginning trying to control my blood sugar, trying to find the right basal rates 12 times a day. But really that was just a two-week problem period."

In some ways the 18-year-old Mr. Herbert is a model graduate of Dr. Lawson's program. "When I was diagnosed with diabetes when I was 14, I accepted it and just tried to deal with it," he said. "My family doctor has told me that he's never seen anyone handle it so well."

Yet Mr. Herbert is also an example of the problems Dr. Lawson faces in gathering data for research. "I'll admit that my biggest problem was filling out forms," he said. "I always knew that it's what I was supposed to do, but it was like sitting down to do extra homework."

"The kids are a volatile test group at the best of times," Dr. Lawson said. "They go through growth spurts, body changes, puberty and emotional changes. You're depending on their memory and counting on their willingness to take the time it requires to gather the necessary information."

Dr. Lawson gets what she needs with a combination of gentle coaxing and sheer force of will, Mr. Herbert suggests.

"She is very hard to say no to," he said. "She's very persuasive, sort of like a good teacher. She'll be encouraging one time, maybe strict another. And you have to admire her for being able to do what she has from a wheelchair. It's hard for us to get down about our diabetes, with her as an example of what you can accomplish if you're determined."

Dr. Lawson makes it clear that she wasn't going to let her wheelchair be an impediment to her life and career.

On June 30, 1983, Margaret Lawson was bicycling from her home to work when she was involved in an accident on Yonge Street in Toronto, running off the road into a lamppost.

"Though I had a spinal-cord injury, I was lucky that, even though I wasn't wearing a helmet, I didn't suffer a severe brain injury," she said.

Doctors advised her that she would have to spend as much as half a year in rehabilitation. They told her she had better plan on returning to school for the winter semester.

"Early on I decided that this accident wasn't going to change my life ... that I wasn't going to let it do that," Dr. Lawson said. "I did the rehab in three weeks. I was back at school in September."

People frequently ask Dr. Lawson why she didn't venture into research on spinal-cord injuries; she has a ready answer. "It wasn't just that I didn't want the injury defining me," she said. "I was already moving on. I didn't even really get to know the names of everybody in rehabilitation. I just wasn't there long enough. And really my interests and abilities brought me into the field of pediatric diabetes."

Many imagine that the researcher's life is one of long, lonely hours in a lab with only bunsen burners and beakers for company, and that progress is only realized in a moment when the contents of a test tube turn a different colour or when something unique appears on a slide under a microscope.

"A lot of researchers have to find a way to take their work from benchside to bedside, but that's not the case with Margaret," said Dr. Alex MacKenzie, director of CHEO's research institute. "Her research might be low tech, but it's high impact. Some researchers view publication as the ends, the measure of success. Margaret has an extensive list of published research, but she also reaches outside and makes a clinical impact."

"I don't think that Margaret would do what she does if there wasn't a human component to her work," said her husband, Jonathan Barker, a lawyer. "Margaret tends to be a catalyst for bringing people together -- into a family, into a community -- and that's what I believe that she's done" at CHEO.

Dr. Lawson and her husband went to Hunan province in China to adopt a daughter, Sophie, a couple of years ago and plan to go back again in the coming months for another child.

"When you talk about nature versus nurture, I can see the influence I've had on Sophie," Dr. Lawson said. "She does everything on a dead run, racing all around. She's so much like me in that way."

Mr. Barker has his own take on his wife's willingness to give her professional life over to a pursuit demanding patience rather than quick returns, the latter seeming more in keeping with her nature.

"Margaret loves challenges," he said. "There might have been easier ways to adopt than to go to China but no inconvenience mattered to her. Never has, when it's something she wants.

"On our honeymoon we went to Venice. There might be more sets of stairs in Venice than anywhere else in the world. But whatever it takes to get something done, Margaret will do that -- fast or slow."

© Copyright 2002 The Ottawa Citizen


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