Caregivers of brain cancer patients play a key role

Despite grim prognoses and aggressive treatments, cancer patients suffering from malignant gliomas — primary brain tumors — often rate their quality of life more optimistically than their caregivers do, according to a new Northwestern University Feinberg School of Medicine study.

The research suggests how important it is for caregivers to speak up if there is something more to be said, said Daniel Jacobs, a clinical researcher at Feinberg and lead author of the paper. “A caregiver may help to give a more complete clinical picture,” he said.

Jeffrey Raizer, M.D., senior author of the paper, has seen many brain cancer patients for years. He says patients often rise to the occasion when they see their doctor and may minimize their symptoms. “You may ask a patient if he is tired and he says, 'No,'” Raizer said. “Then the caregiver will say, 'But you are sleeping 20 hours a day.' So, there is a disconnect. The patient tells you one thing and the caregiver says another.” It was this observation that led to the design of the trial.

Raizer is co-director of the Northwestern Brain Tumor Institute, associate professor of neurology at Feinberg and director of medical neuro-oncology at Northwestern Memorial Hospital. The study will be presented June 6 at the American Society of Clinical Oncology's annual meeting.

Similar quality of life studies have been done on patients with other types of cancer, but it is important to understand specifically how patients with malignant gliomas and their caregivers respond, Raizer said.

“Brain tumors may affect people a lot more than say lung cancer and breast cancer in terms of their personality, language function and their functional ability to do things,” Raizer said. “Brain tumors change people in many ways.”

For the study, 19 patients recently diagnosed or re-diagnosed with grade 3 or 4 malignant gliomas filled out a questionnaire about their quality of life, rating physical, emotional, functional and social well-being. The same questionnaire was filled out by caregivers — family members, significant others or close friends. The questionnaires were given out every two months when the patients were accompanied by their caregivers in the clinic for an MRI.

“It is not just about treating a patient with chemotherapy, but also understanding the psychosocial aspects patient are dealing with,” Raizer said. “Better understanding allows positive interventions to occur.”

The study is titled “Quality of life concordance between patients with malignant gliomas and their caregivers.” It was funded by the American Brain Tumor Association.