SAN FRANCISCO—The creation of an infrastructure for care coordination, survivorship support services, and education promotes individualized services within the metastatic breast cancer setting and appears to improve the quality of life of these patients, according to a new study recently presented at the ASCO 2016 Palliative Care in Oncology Symposium (Abstract 146).
“This project has set out to determine if additional resources devoted to breast cancer survivorship care planning in the metastatic setting would decrease emotional distress and poor symptom management while improving quality of life. To address the evolving survivorship needs in their trajectory from initial diagnosis of advanced disease to end-of-life care, we have been offering patients diagnosed with advanced breast cancer a designated ‘Living with Breast Cancer’ appointment,” lead author Elissa Bantug, MHS, Project Coordinator of the Breast Cancer Survivorship Program at the Sidney Kimmel Comprehensive Cancer Center at Johns Hopkins in Baltimore, told Oncology Times.
Bantug is a two-time cancer survivor. After finding a lump in her breast at the age of 21, it took her 18 months to find a doctor who would be willing to order a mammogram. Her first breast cancer diagnosis was at the age of 23. Two years later, on her 25th birthday, she was diagnosed for a second time with breast cancer.
She has become an outspoken advocate for women living with breast cancer and has first-hand experience with some of the many concerns breast cancer can create, such as coping with long-term side effects, fertility, negotiating with employers while in treatment, survivorship care planning, navigating between medical professionals, and obtaining insurance.
Emotional distress and poor symptom management are highly prevalent among patients with metastatic breast cancer. “A high disease burden can further negatively impact these patients' quality of life. To address the evolving survivorship needs in their trajectory from initial diagnosis of advanced disease to end-of-life care, patients with metastatic breast cancer require prompt assessment, reevaluation, and specialized support services,” said Bantug, adding that “limited survivorship resources are devoted to this patient population and greater attention to their needs is warranted.”
Living With Breast Cancer
To address the survivorship needs of patients with metastatic breast cancer at Johns Hopkins, Bantug and colleagues developed a new initiative designated a Living with Breast Cancer appointment.
“During this dedicated clinic encounter, a palliative care nurse practitioner works with the patient and her caregiver to develop an individualized ‘survivorship care plan’ that describes medical and psychosocial care, symptom management, nutrition counseling, goal setting, mind/body techniques, palliative care, legacy work, pain management, health screening recommendations, family support, community referrals, and care coordination with oncology providers, among others,” explained Bantug.
Patients with stable metastatic breast cancer are referred to this service by the medical oncology team. Patients are then asked to complete an evaluation survey either by email or over the phone 4-6 weeks after the appointment.
Since the initiation of the program in March 2016, Bantug and colleagues have evaluated eight patients (three African-American, three Caucasian, and two Asian). Their mean age is 54.1 years. Most of the patients were approximately 1-year post diagnosis of metastatic breast cancer (range, 1-10 years). The researchers are currently collecting and analyzing evaluation of data from the survey results.
“If successful, the Living with Breast Cancer initiative may allow for more patient-centered care of individuals with metastatic breast cancer and their families at Johns Hopkins,” Bantug concluded. “The initial findings suggest that creation of an infrastructure for care coordination, survivorship support services, and education aims to promote individualized services within the metastatic setting improves the quality of life for this population.”
Mark L. Fuerst is a contributing writer.
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