Early, phone-based, palliative care support improves caregiver quality of life

CHICAGO, IL USA (Press Release) - May 30, 2014 - Findings from a new study, known as ENABLE III, demonstrate the benefits of a specific palliative care phone-based support program for caregivers of patients with advanced cancer. The findings suggest that the earlier the palliative care services can be introduced to caregivers, the better they will be able to cope with the caregiving experience.

“Family caregivers are a crucial part of the patient care team. Because the well-being of one affects the well-being of the other in a reciprocal way, both parties benefit when caregivers receive palliative care,” said senior study author Marie Bakitas, DNSc, Marie L. O'Koren Endowed Chair and Professor at the University of Alabama School of Nursing in Birmingham, AL. “We found that when caregivers began receiving palliative care support around the time of the patient’s advanced cancer diagnosis, they had less depression, perceived themselves to be less burdened by performing caregiving tasks, and had better quality of life.”

asco xIn this federally funded study, one of the first to use a patient and caregiver palliative care intervention in parallel, 207 patients with recurrent or metastatic cancer and 122 family caregivers received palliative care support via a phone-based intervention. One group of patients and family caregivers started receiving this intervention within two weeks of randomization (immediate group) while another group started 12 weeks later (delayed group). The current analysis assessed the benefits only for caregivers.

After enrollment and an in-person assessment, advanced practice palliative care nurses delivered a phone-based curriculum (Charting Your Course) and provided monthly supportive care follow-up to caregivers and patients by telephone. The curriculum covers how to manage problems using creativity, optimism, planning, and expert information; self-care including healthy eating, exercise, and relaxation; how to effectively partner with care recipients in managing symptoms; how to build a support network; and decision-making, decision support, and advance care planning. The Charting Your Course curriculum was developed for the purposes of this research study, and it is publically available. Telephone delivery of the program simplified access to the support for caregivers in rural areas.

Researchers found that the caregivers’ overall quality of life, depression, and demand burden were all improved in the immediate group vs. the delayed group. Early intervention had a large effect on decreasing depression, and small to medium effect on improving quality of life and decreasing perceived burden of caregiving.

“Unfortunately, the full range of palliative care services are rarely taken advantage of because palliative care is often introduced too late in the course of cancer treatment,” said Dr. Bakitas. “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.”

Palliative care is focused on providing patients with relief from the symptoms, pain, and stress of a serious illness. By definition, it is a partnership of patient, medical specialists, and family, with the goal of improving quality of life for both the patient and the family.

There are few organized palliative care programs for caregivers of patients with advanced cancer, and reimbursement for this type of counseling is very limited. An online family care navigator tool from the Family Caregiver Alliance’s National Center on Caregiving website may help family givers find assistance in their local area.

Patient outcomes from the ENABLE III study will be presented separately at the ASCO Annual Meeting (abstract #9512). This research was supported by the National Institutes of Health.

ASCO Perspective:

“This innovative study demonstrates the need for supporting family caregivers during their loved one’s illness, and the specific benefit of initiating this support sooner than later,” said Patricia Ganz, MD, FASCO, ASCO Expert. “Improving the mental health and well-being of the caregiver is an essential component of good palliative care.”

Relevant links from Cancer.Net, the oncologist-approved cancer information website from the American Society of Clinical Oncology:

Relevant links from CancerProgress.Net, the home of ASCO's 50th Anniversary and progress made against 18 of the most common cancers:

Abstract #LBA9513


Title: Benefits of immediate versus delayed palliative care to informal family caregivers of persons with advanced cancer: Outcomes from the ENABLE III randomized clinical trial.
Authors: J Nicholas Dionne-Odom, Andres Azuero, Kathleen Lyons, Zhongze Li, Tor Tosteson, Zhigang Li, Jay Hull, Jennifer Frost, Mark Hegel, Konstantin H. Dragnev, Imatullah Akyar, Marie Bakitas
The University of Alabama at Birmingham Comprehensive Cancer Center, Birmingham, AL; The Geisel School of Medicine at Dartmouth, Hanover, NH; Norris Cotton Cancer Center, Lebanon, NH; Dartmouth College, Hanover, NH; Dartmouth-Hitchcock Medical Center, Lebanon, NH

Background: Family caregivers of individuals with advanced cancer experience significant burden and diminished QOL; few interventions have been found to reduce these outcomes.

Methods: Randomized clinical trial conducted from 10/11/2010 to 9/5/2013 of immediate versus delayed (initiated 12 weeks after randomization) entry patients (n=207) and caregivers (n=122) into ENABLE (Educate, Nurture, Advise, Before Life Ends), a phone-based concurrent oncology palliative care intervention. QOL (Caregiver Quality of Life-Cancer, lower scores=better QOL), depression (Center for Epidemiological Study-Depression) and burden (Montgomery Borgatta Caregiver Burden Scale; subjective burden [SB], objective burden [OB]; demand burden [DB]) measures were collected at baseline, 6, 12, 18, and 24 weeks, and every 12 weeks until patient death or study completion.

Results: Estimated treatment effects (immediate minus delayed) for caregivers from randomization to 12 weeks were (mean [SE]): -3.1 [2.3] for QOL (P=.17), -4.1 [1.3] for depression (P=.003), -1.0 [0.4] for SB (P=.02), 0.3 [0.6] for OB (P=.60), and -0.5 [0.6] for DB (P=.39). Estimated treatment effects (immediate minus delayed) from intervention initiation to 12 weeks were (mean [SE]): -6.4 [3.4] for QOL (P=.06), -7.4 [2] for depression (P<.001), -1.0 [0.6] for SB (P=.08), -0.6 [0.7] for OB (P=.44), and -0.5 [0.8] for DB (P=.50). Estimated treatment effects (immediate minus delayed) measured backwards from the time of patient’s death were (mean [SE]): of -4.9 [2.6] for QOL (P=.07), -3.8 [1.5] for depression (P=.02), -1.1 [0.4] for SB (P=.01), -0.6 [0.6] for OB (P=.26), and -0.7 [0.6] for DB (P=.22).

Conclusions: Caregivers in the immediate group had lower depression, SB, and trends towards better QOL in comparisons up to 12 weeks, following initiation of the intervention in both groups, and in the terminal decline analysis. These results suggest that concurrent oncology palliative care should be initiated as early as possible to maximize benefit to caregivers.

Disclosures: Nothing to disclose

Research Funding Source: NIH


American Society of Clinical Oncology (ASCO)