Defining priorities for research: Interim results of the Canadian metastatic breast cancer priority setting partnership

Abstract

Background: Research priorities are generally determined by funders and researchers without direct involvement and input from patients and caregivers. Certain disease areas have incorporated the patient voice to determine patient driven priorities. In this study, this approach was employed to better understand the needs and priorities of metastatic breast cancer patients and their caregivers. Methods: This study was conducted using methodology outlined by the James Lind Alliance. A steering committee of patients, physicians, patient advocates, and allied health care professionals was assembled to oversee the research study. The initial survey collected unanswered research questions from patients, caregivers, and clinicians. Responses were collected and categorized by consensus of the steering committee. Here we present the results from the national survey. Results: Between November 2016 and April 2017, 733 responses from 311 individuals were collected (62% patients, 11% physicians, 9% caregivers or relatives, 5% nurses/allied health professionals, 2% patient organization representatives, and 10% other). The main themes for key patient priorities are: 136 (19%) related to treatment and monitoring, 78 (11%) linked lifestyle and alternative therapy, 58 (8%) regarded tumour biology, 53 (7%) regarded psychosocial aspects, 46 (6%) to diagnosis, 35 (5%) to toxicity, 24 (3%) to prevention, and 17 (2%) to young or pre-menopausal population. Two hundred and eighty-six (39%) were considered out of scope. The most frequently identified priorities included the role of alternative therapies for improving survival, the role of immune therapy for treating metastatic breast cancer, and the potential for improving outcomes with early detection/surveillance with modern treatment and diagnostic modalities. Conclusions: Patient derived research priorities in advanced breast cancer point to an improved understanding of alternative therapies, integration of immune therapy and a focus on early detection of relapse. These priorities should be addressed by the research community to meet the needs of our patients with advanced breast cancer.