Long-Term Follow-Up

Wanted: a completed questionnaire

Learning about what happens to patients after a transplant is key to better medical care and science.

Fall 2010

You may have, by now, received an LTFU Patient Recovery Questionnaire, and you’re wondering whether to fill it out and return it to us. You may be feeling great, thinking that this particular piece of information is not that important.

Or perhaps you feel that any symptoms you have are yours alone, and that sharing your experience would not help anyone else.

Don’t give it another thought, and please, send it in! All of the information that we gather from patients is extremely important. Your experience will help future patients, just as you relied on what was known about the experience of previous patients when you were making your own treatment decisions.

The first version of the patient questionnaire was created 15 to 20 years ago to help clinicians and researchers find solutions to the problems that patients experience after treatment. Now, we have a new version of the questionnaire that we hope will be easier for patients to fill out—the Patient Recovery Questionnaire. The first copies went out to survivors in July 2010.

“We want to see the full range of experience as patients recover and continue their lives after transplant. If everything is going well years later, that information is just as important as knowing about the problems. If we hear only from people who are still having problems, we won’t be able to see the full picture,” said Peggy Adams Myers, project manager for LTFU research.

The newer version of the questionnaire focuses on recovery, an important area of study for clinicians and researchers, Adams Myers said. And this information is extremely important both for patients who have already had a transplant and also for those who will have one in the future.

“Almost everyone who goes through a transplant is changed in one way or another,” said Dr. Paul Martin, LTFU director. “Patients are incredibly grateful, but we know that complications are frequent,” he said, explaining that many of the complications are relatively minor, but others are much more serious.

“We know, for example, that the effect of a transplant can feel like adding 10 to 15 years of aging. If we know what survivors have experienced and what they are going through, then we can tell everyone more accurately what to expect,” said Martin, who made it his mission to gather meaningful information from patients when he became LTFU director in 1998.

“We tried very hard to shorten the questionnaire, to find a set of questions that draws information that is both useful to clinicians and researchers,” he said. “We are focusing on the big picture and asking more questions about disease and fewer questions about symptoms. We think the revised questionnaire will be much more usable.”

The questionnaire also has special sections dedicated to topics of particular interest. These sections will be changed from one year to the next. Two years ago, this special section asked about insurance problems and about practices to prevent complications after treatment. In 2010/2011, the special section asked questions about heart and blood vessel diseases. The special section for 2011/12 is about spiritual/religious experience.

LTFU occupies a special place in research, thanks to the many patients who have contributed their experiences over the years—a little more than 50 percent of patients return their questionnaires each year. Thanks to this large body of information, LTFU has become a model for other cancer research institutes, which often rely on data gathered here to help their patient populations.

“The Hutchinson Center has dedicated enormous resources for lifelong health surveillance of patients who are surviving after their treatment, some for more than 35 years,” Martin said. “The welfare of our patients is very important. We have insight that other centers can’t match. Often, they look to us and learn from our data.

“With this information, we hope to tell patients what to expect at five, 10, 15 and 20 years down the road.”