Melanie Fridl Ross
They are often called the
Spouses and partners of cancer
patients, they have made it through their loved ones' sleepless sprint
through treatment, only to embark on their own physical and mental
marathon for years afterward.
Now a University of Florida study,
the first to examine the long-term impact of cancer treatment on the
quality of life of partners of blood and bone marrow transplant
recipients, reveals these caregivers are nearly three and a half times
more likely to be clinically depressed than healthy peers and frequently
experience a host of other problems that linger for years.
The findings appear today (April 10)
in the online issue of the Journal of Clinical Oncology.
"Part of what we're trying to do is
bring attention to their experiences and the fact they are indeed cancer
survivors as well - they are impacted by cancer, both directly and
indirectly, and clearly are profoundly affected by it," said Michelle M.
Bishop, Ph.D., a research assistant professor in the department of
medicine's division of hematology/oncology at UF's College of Medicine
and the paper's lead author. "We are concerned they may be neglecting
their own mental health needs. The larger caregiver literature would say
they are likely to neglect their own physical health needs as well."
The UF study, funded by the National
Institutes of Health, highlights the strain of caregiving at a time when
cancer patients are discharged "quicker and sicker" - and as they live
longer than ever. The American Cancer Society estimates there are about
10 million cancer survivors in the United States. And each year, about
40,000 cancer patients worldwide undergo bone marrow or peripheral blood
stem cell transplant, according to the Center for International Blood
and Marrow Transplant Research.
UF researchers collaborating with
colleagues at Northwestern University, the University of Kentucky and
the Medical College of Wisconsin collected data from 177 partner pairs
from 40 North American transplantation centers. The pairs had to be
together since treatment, which took place on average about seven years
before the study began. Survivors had to be in continuous remission from
breast cancer, acute or chronic leukemia, or lymphoma.
Participants, including a comparison
group of 133 healthy peers, completed 26 standardized questionnaires
that evaluated their physical health and numerous quality of life
The findings add to a growing body of
evidence indicating that the strain caregivers experience can have
long-term consequences. The study is the first to show that partners can
experience poorer outcomes than survivors many years after treatment,
particularly in social and spiritual quality of life.
Researchers also found that while
caregivers reported fairly good physical health overall, they reported
fatigue and difficulty concentrating and were less likely to note
positive personal growth in the aftermath of cancer caregiving. In
addition, they tended to experience emotional, sleep and sexual problems
at levels on par with survivors, but perceived less social support, less
marital satisfaction and less spiritual well-being.
About 20 percent of caregivers
experienced clinically significant levels of depression, similar to the
survivor group (about 22 percent). In contrast, only 7.5 percent of
controls experienced depression. In addition, those reporting
significant depression - and presumably at the highest need of mental
health services - were least likely to be receiving counseling or
medication, Bishop said.
"We were surprised by some of the
findings because we had hypothesized that cancer survivors would be at
greatest risk of long-term emotional and physical effects of treatment,
as they were the ones undergoing the rigorous treatment regimen," Bishop
The paper's senior author, John
Wingard, M.D., director of UF's blood and marrow transplant program and
deputy director of the UF Shands Cancer Center, said families are
subjected to "a pressure cooker of emotions and challenges" in the wake
of a cancer diagnosis. Treatment typically requires lengthy stays at a
specialized tertiary care center hundreds of miles from home. Families
frequently face financial hardship as careers are put on hold and
health-care costs mount. Caregivers often juggle tending to partners
with raising children.
The study calls attention to the need
for screening family members and providing them with information,
support and counseling.
"There is a need for a lot more
research in this area," said Laurel Northouse, Ph.D., R.N., a professor
of nursing at the University of Michigan School of Nursing who studies
the impact of cancer on patients and caregivers. "We know the effects of
illness extend to family caregivers. I think this kind of important work
suggests we now need to move to interventions to help patients and
families. We know the stress is there; now we need to help them get the
kind of services they need to cope."
Still, remarkably, many caregivers do
quite well, Bishop said.
"I don't want to give the impression
that it's all terrible and there's no hope," she said. "One of the
tremendous gifts of working with cancer survivors and their families is
to witness the incredible resilience they often exhibit.
"What we're trying to do is learn
from those who seem to handle it fairly well without too many big bumps
in the road, and then also to identify those who may be more vulnerable
to problems," she added. "If we can identify them early, then we can
intervene early and make it more likely that they too could have a
smoother journey through this process."