Informal caregivers play a critical role in the emotional, functional, and medical support of adult cancer survivors, and a burgeoning area of research shows that the well-being of informal cancer caregivers is associated with the mental health and quality of life of the cancer survivors in their care, according to Kristin Litzelman, PhD, Assistant Professor at the University of Wisconsin–Madison.
Parents and informal caregivers are routinely integrated into the care plan of a child with cancer, but in the adult cancer population, caregivers often feel excluded and invisible. “It’s natural that we would incorporate the parents into a child’s care plan. Of course how the parents are doing will impact how the child is doing,” said Dr Litzelman at the American Psychosocial Oncology Society 14th Annual Conference. “But it’s interesting that we don’t think about care that way when we start moving into the adult population.”
Depressed Caregiver = Depressed Survivor
Not only are patient and caregiver well-being intertwined, but research indicates a tangible impact of the informal caregiver on the cancer survivor, she said. One study led by Dr Litzelman revealed that when a spousal caregiver was experiencing depressed mood, the survivor in his or her care was 4 times more likely to report depressed mood 12 months later. The flipside is true too, she noted. When spousal caregivers reported good quality of life, survivors were less likely to be depressed 12 months later. “There’s a tacit implication that what we see in this interconnectedness between the caregiver and the care recipient probably digs down into medical outcomes too.” However, a paucity of research exists on the impact of caregiver well-being on survivor medical outcomes, patient- reported outcomes, and treatment adherence.
Dr Litzelman and her team extracted data from the Cancer Care Outcomes Research and Surveillance consortium (n = 1482) to evaluate the relationship between caregiver well-being and survivors’ perceived quality of medical care. The data revealed that survivors whose informal caregiver had higher levels of depressive symptoms or fair/poor self-rated health were more likely to report poor quality cancer care. Secondary analysis suggested patient psychosocial factors and physician communication and coordination of medical care played a role in that association.
“We saw that when caregivers were worse off, ie, worse health or depressive symptoms, the care recipient felt they were getting worse care,” she said. “It looks like it could be spillover through patient psychosocial factors. When patients have worse quality of life themselves, they’re more likely to report getting poor quality medical care.”
Another possibility is that communication with the medical team/coordination of care is impacted by the way the caregiver is feeling, she noted. If caregivers are depressed or ill, they have a harder time paying attention to the care team, being able to collect information, and coordinating care.
Making the Shift
The association between caregiver well-being and survivor outcomes has implications for survivorship planning, she said. “When we are transitioning adult survivors and helping them move through that process, we don’t necessarily pull caregivers in,” she said. But incorporating caregivers into the transition from active patient to survivor is an important part of supporting them. “There has been a movement towards thinking of caregivers as secondary patients or cosurvivors, and finding a way to push that idea forward may be really impactful,” she added.
According to Dr Litzelman, there will be barriers to making this shift. “In pediatrics the parents are part of the system, and there is an easier way of incorporating a family-centered approach to care, but in the older populations it’s a lot harder,” she said. “But we have the opportunity to address these barriers and use research to support approaches to policy at the hospital and governmental levels, and even support cultural approaches to help improve outcomes for both caregivers and their families.”
