Craig Wight is 54 and living life with gusto: staying fit, eating well and getting regular medical checkups.
Health complaints? Few.
So few, in fact, that until St. Jude researchers contacted him about the need to get heart testing, he had not told his primary physician of his early encounter with cancer.
“I was not meaning to be secretive,” Wight explains, “but it was so long ago that I didn’t think it was all that important.”
He was diagnosed at 17. In people younger than 20, osteosarcoma is the most common type of bone cancer. It typically starts in the arms, legs or pelvis, can spread quickly, and annually affects about 400 patients in the United States and 300 in Canada, Wight’s home.
“My whole knee and about six inches of my femur had to be removed,” he says, “and they replaced that with a metal joint. I had no radiation, but I did have chemotherapy.
“Of course, that was a lifetime ago.”
Thirty-eight years and three metal knees, to be exact.
While Wight for years has complied with requests to further medical science in ways ranging from completing lengthy surveys to collecting his DNA, he knew little of the need for his own special heart screening, called an echocardiogram.
He also did not realize that some childhood cancer survivors are at increased risk for certain heart problems.
The takeaway: Get informed; get an echocardiogram.
St. Jude Children’s Research Hospital staff members who contacted Wight and other survivors were working on how best to get that message out, awareness levels up and survivor screenings completed. Their study, published in the Journal of Clinical Oncology, used two techniques to try to motivate 472 survivors to get echocardiograms:
One group was mailed a personalized health care plan.
A second group received the printed plan plus telephone counseling.
The study measured, among other things, how many patients in each group overcame obstacles—such as personal fear, insurance issues or physician reluctance— and, within a year, got the echocardiograms.
The phoned group won, hands down.
“Specific treatments contribute to a higher risk of heart disease in our survivors as they age,” explains Melissa Hudson, MD, director of the St. Jude Cancer Survivorship Division. She and Cheryl Cox, PhD, of St. Jude Epidemiology and Cancer Control, headed the project, which was part of the Childhood Cancer Survivor Study (CCSS). St. Jude coordinates the CCSS, which tracks the health of more than 20,000 survivors of childhood cancer who were treated at St. Jude and other medical centers throughout the U.S. and Canada.
“We want survivors to be aware of the potential risks for, in this case, cardiomyopathy, a heart muscle weakening,” Hudson says.
The heart of the matter
Periodic screening with an echocardiogram—a test that uses sound waves to create detailed pictures of the heart—can detect problems early and enhance interventions to preserve heart function.
However, getting the test at the recommended times depends on patient awareness, vigilance and, often, persistence, as patients face barriers.
The phone interventions, Hudson says, were tailored to each survivor’s questionnaire responses and subsequent conversations with specially trained, advanced-practice nurses.
“Some people call it motivational interviewing,” says Cox, who specializes in the role of motivation in health behavior.
Cox developed the technique and trained St. Jude nurse practitioners Susan Ogg and Brenda Steen to use it.
“It’s showing obvious respect for a patient, obvious concern, not being authoritative in language or approach. The patients are in control of their destinies. We are there to provide information,” Cox says.
For Wight, that approach worked.
“Susan and Brenda were great,” he says. “The phone call definitely convinced me that I should get the echocardiogram. It was good-natured insistence. Also, my wife gave a little push.”
“Getting participants’ trust was key,” Steen says. “We had two telephone conversations with them. The first was the most important. The patients were finding out new information.
“We gave them the information, talked them through it, helped them follow up and gave them the resources they needed to obtain the echocardiogram,” Steen says.
A personal touch
Obstacles to getting the tests varied. Some patients did not recognize the need or believe it was important. Others said they could not afford the test because of high insurance deductibles, limited coverage or no insurance at all. Some patients said they didn’t have time or simply forgot.
Some of the patients’ doctors did not understand or, perhaps, agree with the recommendation; refused to order the test; or ordered electrocardiograms, which check the heart’s electrical activity, instead of the echocardiograms that were required.
To urge compliance, researchers contacted doctors and wrote insurance companies to explain the patients’ needs.
The study found that the human connection—using trained advanced-practice nurse phone counselors—more than doubled the percentage of patients, ages 25 to 59, who got the needed echocardiograms. Of the printed plan-plus-counseling group, more than half got tested, compared with 22 percent of the printed plan-only group.
Of the total 472 participants, 153 got echocardiograms. Some of those tests revealed heart problems requiring treatment or medical monitoring.
Wight, pleased that his echocardiogram provided a solid baseline with no abnormalities, understands the survivor fear that goes with medical testing.
“Cancer is a big deal in your life,” he admits, “and there’s always anxiety when you to go the doctor.”
So, would he have gotten the echocardiogram if …
“If I’d received just the printed material? I doubt it.”
Abridged from Promise, Spring 2015