Long-Term Follow-Up

Patients need more preventive care info

Asking the right questions leads to better care

Last year, LTFU patients received a questionnaire that included a special section on preventive care practices.

Its intent was to help LTFU staff gauge how transplant patients were doing when it came to getting needed vaccinations and medical tests, among other preventive care measures.

The study confirmed that many patients were doing a good job following preventive practices and undergoing recommended tests at regular intervals. But the study also identified two key barriers to preventive care among some groups: Cost of care and lack of knowledge about the need for preventive care.

The study was based on the responses of 1,549 patients with a median age of 54. The study found that lower adherence rates for recommended preventive care guidelines were strongly associated with:

  • Patients who had lived past 15 years after a transplant.
  • Patients who were non-white, male and younger than 40.
  • Patients who were concerned about medical costs.
  • Patients who said they lacked knowledge about recommended tests.

While 98 percent of respondents had medical insurance, 26 percent were concerned about medical costs and reported efforts to limit medical expenditures. The concerned group was made up mostly of women under the age of 65 with no graft-vs-host disease.

Dr. Paul Martin, LTFU director, said the study clearly outlined that more attention needs to be paid to financial concerns and lack of knowledge on the part of patients to make sure they adhere to important preventive practices.

The study found that 87 percent of the respondents were interested in some form of assistance on health maintenance from the Hutchinson Center; 46 percent didn’t know about recommended tests but would like to know; 26 percent indicated they had no knowledge about tests and relied on their doctors to know the information.

“We are always trying to learn from what we do,” said Martin, whose staff is planning on implementing more effective and clear communications for patients.

“We need a calendar for the patient, a calendar for their physicians, an easy way for them to keep track of things,” he said.

Think of a maintenance manual for a car, for example. They tend to be user-friendly and they quickly and succinctly tell owners what maintenance needs to be done at three months, six months, one year and beyond.

For patients, such a manual would include dates on when to visit the doctor, or when to get certain vaccinations after a transplant.

“Our goal is more effective maintenance for the patients,” Martin said.

Dr. Nandita Khera, who oversaw the preventive care survey and wrote a paper reporting its findings, said that in some instances both doctor and patient lack knowledge on what needs to be done following a transplant.

“It’s the responsibility of a transplant center to provide them that information,” she said. The more they know, the more likely a positive outcome.”

The survey, Khera discovered, showed a lot of concern about the cost of follow-up care.

“If you treat conditions early, you improve the outcomes. And that’s why it’s important to identify factors that prevent people from seeking medical assistance. Yes, patients are concerned about costs, and we need to find a way that this is not an impediment to getting valuable tests done,” she said. LTFU staff members said the preventive care module taught them quite a lot, and they expect to see others like it in the future.

“It if helps us find out something more specific about our patients, great. And if it leads to better care, even better,” Martin said.