Patients with leukemia or lymphoma who undergo hematopoietic-cell transplantation and survive can expect full recovery to take 3-5 years

Hematopoietic-cell transplantation (bone-marrow transplant or stem-cells transplant) is an effective and widely used treatment for hematologic (blood) malignancies. Yet, the rate and predictors of physical and emotional recovery after HCT have not been adequately defined in long-term studies. Improved understanding of recovery could facilitate more accurate informed consent, permit better planning by patients, families, and medical teams, and enable the design of interventions to improve functional recovery.

Dr. Karen L. Syrjala, head of biobehavorial sciences at Fred Hutchinson Cancer Research Center in Seattle, and colleagues conducted a study to examine recovery of physical and mental health and return to work after HCT for treatment of leukemia or lymphoma. Patient function was assessed from pretransplantation to 5-year follow-up for 319 adults who had myeloablative (bone-marrow suppression) HCT for treatment of leukemia or lymphoma. Of the 99 long-term survivors who had no recurrent malignancy, 94 completed 5-year follow-up.

"The impetus for doing this study came from patients telling us that they wanted to know more about what life was like for people after transplant and our own interest in understanding which patients had difficulties in the long term and who did better," said Syrjala. "Now we can take what we learned and help people who are more likely to have a difficult time during recovery. We want everyone to have the best chance for a full life after treatment."

The researchers found that physical recovery occurred earlier than psychological or work recovery. Only 19 percent of patients recovered on all outcomes at 1 year. The proportion without major limitations increased to 63 percent by 5 years.

"An important message to get out to patients, their families and their physicians and nurses is that transplant is not a process that is over when the patient goes home in three months or even in one year, said Syrjala. "There is a physical and emotional process of adjustment that takes three to five years. We want to inform patients and families. It's common when patients have cancer for families to say, okay, we're going to put everything we have into this and then when it's over things will be back to like they were. There is a wish to move on. The patient has that wish too, but the process might take longer than people expect."

Results of this prospective longitudinal study show that recovery after HCT occurs gradually over 1 to 5 years as measured by improvement in physical function, return to work, depression, and treatment-related distress. Given adequate time, 84 percent of survivors returned to full-time work. At some point during treatment or recovery, 22 percent of the patients had symptoms consistent with clinical depression while an additional 31 percent had mild depressive symptoms. Higher levels of depression, lower levels of physical function, and less satisfaction with social support before HCT increased the risk of impaired physical and emotional recovery after the transplantation. Women had increased risk for depression, treatment-related distress, and delayed return to full-time work. Conversely, previous experience with chemotherapy or radiation therapy before beginning HCT seemed to facilitate recovery from the psychological aspects of this intensive treatment.

According to the research team, these results are both encouraging and cautionary. Patients, families, and medical teams depend on accurate recovery data when planning for posttransplant needs. Expectations that contradict actual experience cause stress for survivors and potential conflicts with family, work, and the medical team. To facilitate realistic planning, clinicians and patients should understand that full recovery requires more than a year for most survivors. Patients at risk for delayed recovery can be identified before transplantation. The researchers are now looking at rehabilitation programs that might improve the physical and psychological health of HCT recipients and other patients who have survived after curative treatment for cancer.

This work was supported by grants from the National Cancer Institute.