ASCO 2014: Starting Palliative Care Support for Family Caregivers at the Time of Cancer Diagnosis Improves Quality of Life
Introducing a palliative care support program for caregivers of patients with advanced cancer at or near the time patients are diagnosed provides greater benefits than delayed palliative care services, according to results of the ENABLE III study reported at the 2014 ASCO Annual Meeting in Chicago (Abstract LBA9513).
“This is the first palliative care study to include family caregivers and investigate this important issue of timing,” the study’s senior study author, Marie Bakitas, DNSc, reported at the ASCO press briefing on patient care and quality of life. “Our results demonstrate that family caregivers’ quality of life, mood, and stress burden were improved in the groups that received the intervention closest to the time of diagnosis,” she said. Dr. Bakitas is Marie L. O'Koren Endowed Chair and Professor at the University of Alabama School of Nursing in Birmingham, Alabama.
The supportive palliative care intervention was phone-based and known as ENABLE (Educate, Nurture, Advise, Before Life Ends). The study found that early intervention with ENABLE had the greatest effect on decreasing depression, and lesser effects on improving quality of life and decreasing perceived burden of caregiving. “In our future studies, we are investigating how these results will hold up in a more racially diverse underserved population,” Dr. Bakitas added.
Study Details
Patients were asked to identify a family caregiver, “defined as someone who knows you well and is involved in your medical care,” Dr. Bakitas explained. “The patient and family caregiver were randomized as a dyad,” she said, to begin the intervention immediately or after a 12-week delay. A total of 207 patients with recurrent or metastatic cancer and 122 family caregivers were enrolled. In addition to this analysis of results for caregivers, patient outcomes from the ENABLE III study were presented separately at the Annual Meeting (Abstract 9512).
A telephone program was used to simplify access and meet the needs of a rural population, but the intervention began with one in-person visit and assessment of the cancer patient, “which the family caregiver was encouraged to attend,” Dr. Bakitas said.
“The telehealth component consisted of three structured phone calls with a nurse coach,” Dr. Bakitas said. “Each session covered topics directed at both supporting and empowering the caregiver.” The phone-based curriculum, Charting Your Course, includes 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 study, and it is publicly available.
Caregiver Support Often Introduced Too Late
Many patients with advanced cancer “require up to 8 hours of assistance from a family caregiver,” Dr. Bakitas noted. “These family caregivers are vital but often neglected members of the cancer care team providing essential care to the patient, including symptom management, physical, emotional, and personal care support. These family caregivers experience psychological distress equal to and sometime greater than the person with cancer. The family caregiver’s stress can lead to poor physical health and even a higher risk of death. This burden of family caregiving is truly and underrecognized public health crisis,” Dr. Bakitas continued. “Unfortunately, few interventions have been found to obviate the family caregiver burden, and the palliative care services, though potentially beneficial, are often provided very late in the cancer trajectory.”
Patricia Ganz, MD, ASCO expert on breast cancer and palliative care and moderator of the ASCO press briefing, called the ENABLE III study a “high-level, evidence-based study, showing us that we should include palliative care from the time of diagnosis.” She said that the patient outcomes reported separately show “a 1-year survival difference between those who got the early intervention vs the late intervention. We are talking about an intervention that not only enhances the quality of life for the caregiver, but also enhances the survival of the patient. Palliative care needs to be incorporated into the care of all of our patients with cancer from the time of diagnosis.” Dr. Ganz is Director, Cancer Prevention and Control Research, Jonsson Comprehensive Cancer Center, Los Angles.
This research was supported by the National Institutes of Health.
The content in this post has not been reviewed by the American Society of Clinical Oncology, Inc. (ASCO®) and does not necessarily reflect the ideas and opinions of ASCO®.
