Caregivers Benefit From Immediate Versus Delayed Palliative Support

TON - July/August 2014 Vol 7 No 4

Introducing palliative care services early for caregivers of patients with advanced cancer improves their ability to cope with the caregiving experience, according to results of a study presented at the American Society of Clinical Oncology (ASCO) 2014 annual meeting. The study, called Educate, Nurture, Advise, Before Life Ends (ENABLE) III, showed that a palliative care, phone-based support program designed for caregivers was able to reduce depression and stress, and improve quality of life for caregivers if given early rather than later. This is the first randomized trial to evaluate the optimal timing of palliative oncology care, said the authors.

“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 the palliative care is not end-of-life care, but rather an extra layer of support to be offered along with curative medical treatments,” said senior study author Marie Bakitas, DNSc, the Marie L. O’Koren Endowed Chair and Professor at the University of Alabama School of Nursing in Birmingham.
Family caregivers are a crucial part of the patient care team. The well-being of patients affects the well-being of caregivers, and vice versa, she continued. “Our study showed that when caregivers begin to receive palliative care support around the time of a diagnosis of advanced cancer, they experienced less depression, perceived themselves to be less burdened by performing caregiver tasks, and had better quality of life.”

The federally funded study enrolled 207 patients with recurrent or metastatic cancer and 122 family caregivers. The patient and caregiver palliative care intervention was given in parallel and consisted of palliative care support via telephone. One group of patients and caregivers received the intervention within 2 weeks of diagnosis (immediate group) and the other started 12 weeks later (delayed group). The analysis Bakitas presented was confined to caregiver results.

Intervention Details
After an in-person assessment, advanced practice palliative care nurses delivered a phone-based curriculum called Charting Your Course and provided monthly phone-based supportive care follow-up to both patients and caregivers. The Charting Your Course curriculum covers problem solving, using creativity, optimism, planning, and expert information; self-care, including diet, exercise, and relaxation; how to partner with patients in symptom management; building a support network; and decision making, decision support, and advanced care planning. The curriculum was developed for research purposes and is now publicly available.

Results showed that caregivers who got immediate palliative services intervention had significantly improved Caregiver Quality of Life Index-Cancer scores (mean decrease of 7.2 points, P = .02) and significantly less depression as measured by the Center for Epidemiologic Study-Depression Scale (mean decrease of 6.9 points, P = .006). Those in the immediate group also experienced less caregiver burden as measured by the Montgomery Borgatta Caregiver Burden Scale, but this difference did not reach statistical significance. Between-group differences in caregiver experience were maintained at 24 months.

Results on overall quality of life and caregiver burden also favored immediate palliative services.

“Subjective outcomes of caregivers were improved by doing the intervention immediately as opposed to waiting until 3 months after the diagnosis of advanced cancer. The key message here is that starting palliative care earlier achieved statistically better outcomes in quality of life, depression, and stress burden for caregivers,” Bakitas stated.

An online family care navigator tool is available on the website of the Family Caregiver Alliance’s National Center on Caregiving.
At the ASCO annual meeting, patient outcomes from the ENABLE III study were presented separately and showed improved survival in patients who received immediate versus delayed palliative care services.

Dionne-Odom JN, Azuero A, Lyons K, et al. Benefits of immediate versus delayed palliative care to informal family caregivers of persons with advanced cancers: outcomes from the ENABLE III randomized clinical trial. Presented at: 50th Annual Meeting of the American Society of Clinical Oncology; May 30-June 3, 2014; Chicago, IL. Abstract LBA9513.

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