Study finds overall health and quality of life intact 10 years after stem-cell transplantation

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"In many areas of health, our survivors are undistinguishable from case-matched controls who participated in this study and had not had a transplant," said lead investigator Karen Syrjala, Ph.D., head of the Biobehavorial Sciences group in the Hutchinson Center's Clinical Research Division.

For example, the study found that transplant survivors and case-matched controls reported similar rates of hospitalization and outpatient medical visits. They had similar rates of diseases and conditions such as asthma, diabetes, high blood pressure, high cholesterol, osteoporosis and hypothyroidism, and they had similar psychological health, marital satisfaction and employment.

However, Syrjala and colleagues also found that transplant patients had a higher incidence of musculoskeletal problems, such as stiffness and cramping; poor long-term sexual health; and increased urinary frequency and leaking than the control group. Long-term survivors also had higher use rates of anti-depressant and anti-anxiety medications even though reported rates of depression and anxiety were about the same as that of the control group.

The study also reported potentially under-diagnosed problems among survivors such as the bone-thinning disease osteoporosis and hypothyroidism because the reported rates of these diseases were lower than expected.

The researchers urge primary care providers to routinely screen for these problems, which might otherwise be considered relevant primarily to older populations, Syrjala said. The median age at transplant of the patients surveyed was 36.4 years.

In all, survivors reported an average of 3.5 medical problems versus 1.7 for controls, even though survivors and controls had similar rates of hospitalization and outpatient medical visits.

Syrjala and colleagues made an important and positive observation among 10 percent of the survivors who had suffered relapse and were in complete remission at the time of the study. "The fact that patients can relapse and still have healthy, full lives 10 years later and look like everyone else who has gone through a transplant without relapse is really good news," she said. "In the past, relapse after a transplant was always thought to be a very bad sign for quality of life."

All of the patients in the study were transplanted at the Hutchinson Center between March 1987 and March 1990. More than 400 patients consented to the study and after 10 years 137 transplant survivors and an equal number of controls completed a self-report of medical problems, symptoms and health-related quality of life. Most of those surveyed had been treated for leukemia or lymphoma. More than three-quarters received donor cells from a matched relative. There was an almost equal split between males and females.

Survivors were asked to nominate a case-matched control participant, ideally a biologic sibling of the same gender and within five years of age; this was achieved in 60 percent of the controls.

The study survey asked participants about 85 diseases and symptoms and to indicate whether they had these problems now, whether the diseases or symptoms were ever a problem in the past 10 years or were no longer a problem. Twenty-seven diseases or conditions emerged as the most prevalent and were included in the final analysis. They ranged from asthma to second cancers.

"Ten years after HCT (hematopoietic cell transplantation), the 137 survivors were indistinguishable from case-matched controls in many areas of health and psychosocial functioning, although survivors reported a greater number of medical problems and greater limitations in sexuality, insurance and social, emotional and physical roles," the authors wrote. "Some of these problems are known to be associated with HCT, while others have not been recognized previously as late concerns."

This type of research is important, Syrjala said, because the number of long-term survivors of stem-cell transplantation is increasing rapidly. For example, patients with acute leukemia or chronic myeloid leukemia who survive without recurrent malignancy for two years after allogeneic stem-cell transplantation (the infusion of stem cells from a donor) have an 89 percent probability of surviving for five or more years. More than 45,000 people worldwide receive stem-cell transplants each year.

The study is important also because information on 10-year survivorship has been sparse. "Although research on late effects has increased, systematic information has not been available to guide oncologists or primary care physicians in routine monitoring and management of health-care needs after 10 years in this population," the authors wrote.

Fred Hutchinson Cancer Research Center