Poor Quality of Life Experienced By 1 in 5 Caregivers of Transplant Recipients

One in five family caregivers of patients who receive hematopoietic cell transplants (HCT) experience poor quality of life (QOL), even several years after HCT, according to the findings of a study presented during the 2017 American Society of Hematology (ASH) Annual Meeting held Dec. 9-12 in Atlanta.

In many cases, caregivers — spouses, parents, children and siblings — are the people providing transportation to and from appointments, managing medication and providing emotional support. Those duties can sometimes be 24 hours a day, seven days a week, spanning for years, said Kareem Jamani, M.D., of Fred Hutchinson Cancer Research Center in Seattle.

Previous studies have found that caregivers of HCT recipients have more sleep and sexual issues, more depressive symptoms and more loneliness, as well as less social support and less spiritual well-being than HCT recipients.

To examine caregiver QOL, researchers attached a caregiver survey along with an annual survey that was sent to 4,446 HCT recipients from July 2015 to June 2016. Both the recipient and caregiver were asked to complete the surveys — 849 recipient/caregiver pairs responded. A third of them had received autologous HCT, a process where the patient’s own stem cells are collected.

The median ages of caregivers and recipients were 63 and 62 years, respectively. Recipients were a median of six years past transplant, but for some, it had been decades.

Researchers found that the majority of caregivers were at or above general population norms regarding QOL. However, about 20 percent of caregivers had poor physical or mental QOL, or both, compared with the general population. Worse mental and physical QOL were reported by women caregivers and caregivers who had less education. For caregivers over 60 years old, worse physical QOL was experienced.

In addition, the survey showed that a caregiver’s mental health was more likely to be poor if the patient relapsed after they had undergone an autologous transplant. “I think that lends itself to saying that we can probably identify these caregivers who might be at risk, even before the transplant happens, using those characteristics,” said Jamani in a press release. “We can intervene before transplant and come up with a support plan for them.”

Caregivers play a crucial role in helping patients during and after HCT, according to Jamani, who added that they are important to outcomes, including survival. Since caregivers are so pivotal, doctors at Fred Hutchison Cancer Research Center require patients to have one before they undergo a transplant.

“This research opens up the floor to studies of how we can support caregivers we think could be at risk,” said Jamani. “And even outside of the research realm … maybe we as clinicians will realize, ‘hey, maybe the caregiver needs some support here,’ not just the patient.”

A second caregiver survey is currently being reviewed by the researchers, which assesses post-traumatic stress disorder (PTSD). They also have begun a small study testing an intervention to encourage positive ways of thinking in caregivers and their patients.