Randomized Trial Finds Caregiver Quality of Life Improves With Early Palliative Care

Marie Bakitas, DNSc

When advanced practice palliative care nurses offer a formal program of palliative care to the family caregivers of patients with advanced cancer soon after diagnosis, the caregivers experience better quality of life, less depression, and a lower sense of caregiver burden, a randomized clinical trial reported May 30 at the 50th Annual ASCO Meeting in Chicago has found.

Today, there is greater awareness of the benefits which can be realized for both the cancer patient and the caregiver when support is provided to both care partners. A broader understanding of palliative care also has emerged, whereby palliative care is no longer equated with end-of-life care, but rather, seen as a crucial component of treatment throughout the care continuum.

“Family caregivers are a crucial part of the patient care team,” noted lead author Marie Bakitas, DNSc, the Marie L. O’Koren Endowed Chair and professor at the University of Alabama School Nursing in Birmingham. Because the wellbeing of one affects the wellbeing of the other in a reciprocal way, both parties benefit when caregivers receive palliative care.”

Bakitas noted that many patients with advanced cancer will require up to 8 hours of assistance from a family caregiver. “These family caregivers are vital, but often neglected, members of the cancer care team, providing essential care to the patient, including symptom management, and physical, emotional, and personal care support.”

She added that caregivers can experience distress equal to and sometimes greater than the patient with cancer, as well as have poor health and even a higher risk of death. Few interventions have been found to obviate this burden, she said, and palliative care services are often delivered late in the cancer trajectory.

The ENABLE III (Educate, Nurture, Advise, Before Life Ends) randomized clinical trial conducted from 2010-2013 is one of the first to employ a patient and caregiver palliative care intervention in tandem. This presentation focused on results for the family caregivers (n = 122); findings for patients (n = 207) are being presented at the ASCO meeting on June 3 (Abstract 9512). For both groups, palliative care began within 3 months of diagnosis.

In addition to evaluating the palliative care intervention for both patients and caregivers, the researchers wanted to find out whether delivering it early would make a difference. Thus, the immediate group received the intervention within 2 weeks of randomization, whereas the delayed group began the program 12 weeks later.

The intervention was comprised of an in-person assessment at enrollment, followed by receipt of an evidence-based, publicly available curriculum with a guidebook, Charting Your Course, delivered by advanced practice palliative care nurses through three structured phone calls. The nurse coaches also provided supportive follow-up care through monthly telephone calls. The curriculum focuses on problem-solving, communication, and decision-making skills, as well as advance care planning, how to be a partner in the patient’s symptom management, and self-care strategies such as healthy eating, exercise, and relaxation.

Outcomes data on depression, quality of life, and caregiver burden were collected at baseline, and at 6, 12, 18, and 24 weeks, and every 3 months thereafter until study completion or death of the patient.

Bakitas explained that for all measures, lower scores represent better results. At 12 weeks after both groups started the intervention, the immediate caregiver group’s mean quality of life score was 50.2 versus 56.1 for the delayed group (P = .02). The immediate group also had a lower depression score (10.2) versus 16.6 in the delayed group (P = .0006). Bakitas noted that the clinical cutoff score for depression was 16. She added that there were also favorable trends toward lower caregiver burden (P = .10) and that the results on the three outcomes were confirmed in a subset analysis of the caregivers of patients with the most advanced disease.

“Our results demonstrate that family caregivers’ quality of life, mood, and stress burden improved in the groups who received the intervention closer to the time of diagnosis,” Bakitas said. “Unfortunately, the full range of palliative care services is rarely taken advantage of because palliative care is often introduced too late in the course of cancer treatment. Patients and caregivers should understand that palliative care is not end-of-life care but rather an extra layer of support that can be offered along with curative medical treatments.”

ENABLE III was supported by the National Institutes of Health, National Institute for Nursing Research.

Dionne-Odom JN, Azuero A, Lyons K, et al. Benefits of immediate versus delayed palliative care to informal family caregivers of persons with advanced cancer. Outcomes from the ENABLE III randomized clinical trial. J Clin Oncol. 2014;32:5s (suppl; abstr LBA9513).