The importance of family caregivers on a cancer journey

A University of Hawai'i Cancer Center study found the presence of a family caregiver created positive perceptions of care coordination from cancer patients. Care coordination is the organization and management of a patient's healthcare services and care delivery, from scheduling visits with oncologists to facilitating communication between providers and patients.

"The cancer caregiver is the unsung hero on a cancer journey. With little thought of self, the family caregiver propels him or herself into this role unexpectedly and with little or no training. Recognizing the family caregiver as an integral part of the patient care team will have a great impact in the ability to deliver high-quality care," said George and Jeannie Stewart with Compassion for Cancer Caregivers and members of the UH Cancer Center's Community Advisory Board.

The study, "Assessing Patients' Perception of Cancer Care Coordination in a Community-based Setting," published in JCO Oncology Practice, a journal by the American Society of Clinical Oncology, highlighted how family members of cancer patients are increasingly being relied on to assume informal caregiving duties and responsibilities of providing critical assistance and management of a patient's healthcare needs.

A novel care coordination instrument was used to examine the perception of cancer care coordination among the study's 200 Hawai'i cancer patients receiving active therapy. The 29-item patient questionnaire, validated in prior studies based at the UH Cancer Center, assesses care coordination across varied practice settings and patient populations.

"We found that having a family caregiver for outpatient oncology care is an important component of well-coordinated care," said Randall Holcombe, UH Cancer Center director and principal investigator of the study. "This may be because care coordination-related tasks fall on the family member rather than the patient. The inclusion of a family caregiver in the care coordination process may be key to improving cancer care coordination and health care delivery for the patient."

"Health systems are increasingly emphasizing patient-centered approaches to treat individuals, rather than diseases. It will be useful to develop innovative ways to provide care coordination support informed by patients and their families," said Izumi Okado, UH Cancer Center postdoctoral research fellow and lead author of the study.