Research priorities in metastatic breast cancer: A James Lind Alliance Priority Setting Partnership

Abstract

Breast cancer remains the most common cancer among women, and the second most common cause of cancer death. With advances in treatment, women are living longer, in some cases many years, with metastatic breast cancer (MBC). These advances are a direct result of research, however, many studies are primarily researcher or industry led, with minimal input from patients and caregivers. The James Lind Alliance (JLA) brings patients, caregivers, and clinicians together in priority setting partnerships (PSPs) to determine key priorities in research. In this study, we utilized the JLA approach to identify unanswered questions on MBC from patient and clinical perspectives and prioritized to reach a top 10. Following the established JLA approach, MBC patients, caregivers, and health care professionals (HCPs) were surveyed to elicit their questions regarding MBC. Research questions were generated from survey responses, and following literature review to ensure the questions were currently not completely answered, an interim prioritization survey was conducted to identify a shortlist of questions taken to a final consensus meeting. One thousand, one‐hundred and ninety‐four responses were collected from 668 individuals, which were refined into 62 unique unanswered questions. The interim prioritization survey was completed by 174 individuals, and the top 27 questions were taken to a final meeting to determine by consensus the top 10. The top 10 questions cover a wide range of research questions, identified by valuable stakeholders as being priorities. This list can be used to inform prioritization and funding of future MBC research.

Top 10 research priorities for early-stage colorectal cancer: a Canadian patient-oriented priority-setting partnership

“…However, our recruitment materials and surveys were in English only, and our priority-setting meeting was conducted in English. We are reassured that many of the broader themes and questions generated in our study were similar to JLA studies in other cancer populations 17 , 18 , 41 – 43 and to a 2018 study identifying critical research gaps in colorectal cancer. 44 Researchers using similar priority-setting approaches in the future should consider incorporating equity, diversity and inclusion principles and resources.…”

Top 10 research priorities in colorectal cancer: results from the Colorectal Cancer Priority-Setting Partnership

“…To our knowledge only one previous PSP in Germany has been performed: for pancreatic cancer treatment by our group (Klotz et al 2020). In terms of scope, number of participants, and number of topics proposed, the CRC PSP is comparable with some of the previous oncological PSPs (Nixon et al 2020), while other oncological PSPs were much smaller (Lophatananon et al 2011). The results of the CRC PSP show the need for research in many different areas and pertain to basic, translational, clinical, and health services research.…”

Awe and anxiety for cancer cells: connecting scientists and patients in a holistic approach of metastasis research

“…For metastatic breast cancer the top 3 priorities were the following [ 45 ]: What biomarkers or intrinsic features of the tumour can be used to identify response to specific treatments and dosing schedules? What is the role of immunotherapy for metastatic breast cancer?…”