The Gift of Life Comes With a Price

Doctors and nurses attending a stem cell transplant conference in Orlando FL mid-February heard a report that confirmed what many transplant survivors and their spouses already know: the gift of life often comes with a price.

In the first study of its kind, researchers¹ interviewed 662 transplant survivors and 177 spouses of survivors to evaluate their quality of life after transplant. The study is unique because it focused on both survivors and spouses. All of the survivors who participated in the study were disease-free. Time since transplant ranged from 1.8 years to 22.6 years. The researchers compared the responses from each group to a group of 158 healthy people who had not been through transplant, but were similar in age and education.

Preliminary analyses showed significant differences between the three groups. Not surprisingly, the survivors reported more physical problems, sleep difficulties and mental processing problems than either their spouses or the non-transplant group. Both survivors and spouses reported greater fatigue than the non-transplant group, as well as more sexual and emotional difficulties. One-third of the survivors and one-fourth of the spouses reported clinically significant levels of depression. There was no correlation between the years since transplant and these reported problems.

In a separate analysis of the 177 spouses and the survivors who were married to them, spouses reported greater loneliness than the survivors. Spouses also felt more inhibited about expressing their transplant-related thoughts and feelings with the survivor, and reported the lowest level of social support.

The spouses also reported less positive growth from the experience than survivors. Survivors more often said they had a new appreciation for life, closer relationships with loved ones, new priorities or a greater sense of spirituality than their spouses.

Spouses who are part of BMT InfoNet's Patient to Survivor Link Program were not surprised by the findings.

"The transplant is a very lonely time for the spouse," says Leslie Weisner who was the caregiver for her husband, Barry. "Even if you are surrounded by friends, there is a sense that no on can really know what this is like."

"I felt the loneliness and lack of support," says Selma Catagay-Searfoss. "That's why I volunteer to talk to other caregivers and help them through the experience. David could use me as a sounding board, but I felt like I had no right to complain or express my feelings. It was a lonely journey and the trauma I felt definitely lasted longer than his."

"Clearly, substantial proportions of both the survivors and spouses are hurting, even years later," says Michelle Bishop PhD who presented the study. "Based on these findings, we plan to test an intervention to determine if we can improve the adjustment for both survivors and spouses."

"The first intervention will target the needs of the spouses," says Bishop. "Although they are given a lot of information before leaving the hospital, spouses don't fully know what life will be like for them when they get home. They have to manage the patient's care, as well as domestic activities, their job, care for the children, family finances and assume roles that the patient usually does. A significant number of spouses continue to report stress for many years post-transplant. We want to intervene to prevent that from happening."

The proposed intervention will have both an educational and an emotional counseling component. Spouses will receive information about what to expect, how to manage problems, and specific coping and problem solving skills. Trained counselors will call spouses weekly and provide a half hour or hour of social support. "We're also thinking of incorporating expressive writing into the intervention as a way for the spouse to identify what the stressors are, and to help them process feelings they may be having," says Bishop.

One physician attending the conference noted that the study results might actually understate the extent to which survivors and their spouses are experiencing stress, since divorced spouses of survivors were not included in the analysis. Seventy percent of the survivors interviewed were married, as were all of the spouses.

Fortunately, not all survivors and their spouses experience significant levels of emotional stress long-term, and some spouses do find some good that came out of the experience.

"The silver lining is that as a result of this experience, we're better parents, better partners and better people," says Doug Hasler who was the caregiver for his wife Deena. "We know the precariousness of living, and appreciate the joys we're given."

¹ Bishop, M., Hahn, E., Brady, M., Andrykowski, M., Beatmount, J., Rizzo, D., Wingard, J.: The Gift of Life Comes With a Price: The Impact of Hematopoietic Cell Transplant on the Long-Term Quality of Life of Survivors and Their Spouses; Clinical Abstract, 2004 ASBMT/IMBTR Tandem Meeting.