Palliative Care: It’s for Caregivers Too, Says Study

by Kate Johnson
May 30, 2014

CHICAGO — Palliative care delivered concurrently to advanced cancer patients and their caregivers can significantly improve quality of life (QOL) for both parties — and even prolong patient survival — when it is started at cancer diagnosis rather than months later, according to the Educate, Nurture, Advise, Before Life Ends (ENABLE III) trial.

The burden of family caregiving is an under-recognized public health crisis, said lead investigator Marie Bakitas, DNSc, from the University of Alabama School of Nursing in Birmingham, who presented the findings here 2014 Annual Meeting of the American Society of Clinical Oncology®.

“Caregivers are an often invisible yet important part of the cancer patient’s care team,” she told Medscape Medical News. “The well-being of one affects the well-being of the other in a reciprocal way.”

“Many advanced cancer patients will require up to 8 hours of daily assistance from a family caregiver, who “can experience psychological distress equal to and sometimes greater than the person with cancer,” she reported during a press conference.

The ENABLE III trial is innovative because, unlike other studies that have assessed the impact of early palliative care, it targeted patients and caregivers as a dyad, explained press conference moderator Patricia Ganz, MD, professor of medicine and director of the patients and survivors program area at the David Geffen School of Medicine, University of California, Los Angeles.

“The novelty here is that the families were also the target of the intervention,” she told Medscape Medical News. “They need just as much support as the patient to help the patient go through that journey; that’s what’s really innovative. When we do palliative care, we need to consider the patient and their caregiver as a unit.”

In the study, 207 patients with advanced cancer and 122 caregivers (a caregiver was not required for enrollment) were randomized to immediate palliative care or to palliative care delayed by 12 weeks. The care consisted of 1 in-person meeting and monthly phone-based supportive care.

The intervention, called Charting Your Course, was developed specifically for the study and covered self-care, building a support network, decision making, and advanced planning, Dr. Bakitas explained.

The primary aim of the study was to determine the effect of the intervention on caregiver QOL and depression and burden, and on patient QOL, symptoms, mood at 3 and 6 months, and survival at 1 year.

At 12 weeks, caregivers in the immediate group reported a better QOL than those in the delayed group (P = .02), and less depression (P = .0006). There was also a trend toward less burden in the immediate group (P = .10). Scores on the Center for Epidemiological Studies Depression Scale that indicated clinical depression was less common in the immediate group than in the delayed group (10.2 vs 16.6).

In addition, patients in the immediate group “experienced a significant survival advantage at 1 year,” the researchers report. “However longitudinal treatment effects were not statistically different.” Details of the patient outcomes will be presented later at the meeting.

“We should include palliative care from the time of diagnosis,” said Dr. Ganz. “We are talking about an intervention that not only enhances quality of life for the caregivers, but also enhances the survival of the patient.”

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