Intervene Early to Support Caregivers of Patients With Glioblastoma

October 26, 2016
Brielle Urciuoli

Caregivers of patients with GBM have an increased time burden and can affect the quality of life of the caregiver and, potentially, the patient with cancer.

Caregiver burden is higher for individuals caring for patients with glioblastoma (GBM), due to the physical and neurologic deficits associated with this diagnosis, but how does the increased time burden in this setting affect caregiver quality of life?

Researchers at the University of Rochester Medical Center are examining that question and one of the study authors, Lauryn Hemminger, BS, presented results of a prospective study at the recent Palliative Care in Oncology Symposium.

“One study 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,” explained Hemminger. “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.”

The study by Hemminger and colleagues involved 43 caregivers of newly diagnosed GBM patients and was conducted between September 2015 and June 2016. Caregivers completed quality-of-life assessments at baseline and 3 months post-diagnosis and recorded the total hours per week spent on patient care.

Results revealed that caregiver time burden is high, even in the early stages of patient diagnosis with GBM. 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 said she 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.”

Hemminger L, Pittman C, Mohile N. Caregiver time burden in newly diagnosed glioblastoma: a prospective analysis. J Clin Oncol. 2016;34(suppl 26S; abstr 242).