Study Shows Heavy Time Burden for Caregivers of Patients With Brain Cancer

Studies have shown that caregiver burden can impact patient outcomes, but what kind of effects are seen when the patient has a brain cancer diagnosis, which often leads to both physical and neurologic deficits? A group of researchers at the University of Rochester Medical Center is seeking to answer the question.

“There was one study that looked at caregivers in neuro-oncology versus caregivers in other oncologic diseases, and it showed that the burden was actually higher for caregivers who were taking care of patients with gliomas,” Lauryn Hemminger, an author on the study said. “We think that's likely because of the neurologic deficits and the cognitive decline leading to a little bit more physical and cognitive dependence in patients who have malignant gliomas.”

In a small prospective study, Hemminger found that caregiver time burden is high, even in the early stages of patient diagnosis with glioblastoma. For many caregivers, caring for their loved one quickly turned into a full-time job, even before there were significant declines in physical or neurological function — a result Hemminger was surprised to find.

“We thought early in the disease, patients may not have as many symptoms or have as much cognitive decline as they do later in the disease. But we actually found that a lot of caregivers were spending more that 40 hours a week on patient care, even right after the initial diagnosis,” Hemminger said. “This was most noticeable in the primary caregivers.”

The study considered anyone who “thought they played a supportive role [for patients]” as a caregiver, Hemminger said.

Because the dataset was small, Hemminger said that they cannot definitively declare the relationship between caregiver time burden and patient/caregiver quality of life a correlation, but it definitely could be defined as an association.

“So, spending more time on direct patient care was associated with higher distress or lower quality of life, using the measurements that we looked at,” Hemminger said.

The trial is ongoing, and Hemminger said she hopes to broaden the scope of the trial to gain further insight and ultimately create worthwhile interventions that can improve quality of life for both the caregiver and patient.

Though it was proven in other cancer types that caregiver well-being has an effect on patient outcomes, it is a difficult correlation to make in the world of neuro-oncology.

“It's hard to say, because these patients are already going through so much as it is, and it's such a terrible disease,” Hemminger said. “But I do think when caregivers feel more prepared to care for the patient and they feel like they have plans of action in case of a crisis, patients tend to benefit from that because the caregivers are more prepared at home.”

This, Hemminger said, is why it is crucial to prepare caregivers for the difficult road that may be ahead of them when their loved one is diagnosed.

“Ideally, I would love to see direct caregiver care being given alongside disease-directed therapy,” she said. “Just understanding their experience is definitely the first step. From there, being able to develop cost-effective and resource-effective interventions that can target caregivers and actually affect outcomes — that's the future.”