Quality of life a long-lasting concern for cancer patient caregivers
GAINESVILLE, Fla. — They are often called the forgotten survivors.
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, 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 measures.
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 said.
The paper’s senior author, Dr. John Wingard, 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, 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.”
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