Towards patient-centered research in pregnancy-associated breast cancer: creating a science agenda through a...

Pregnancy-associated breast cancer (PABC) is a rare yet increasingly prevalent condition, characterized by diagnostic delay, distinct tumor biology, and complex clinical and psychosocial challenges that are insufficiently addressed within contemporary breast cancer research agendas. We aimed to develop a patient-centered research agenda for PABC through a Priority Setting Partnership (PSP), bringing together patients, clinicians, and researchers to identify and prioritize key unanswered research questions.

A PSP was established comprising patients with PABC, healthcare professionals, and researchers from the Netherlands. Four focus group sessions were conducted and facilitated by an independent moderator using Socratic dialogue techniques to elicit lived experiences. Research questions were subsequently submitted and discussed, followed by prioritization through a structured weighted voting process involving both focus group participants and a broader sounding board.

The focus group included seven patients, four healthcare professionals, and three researchers. The sounding board consisted of 12 patients and four clinicians. Fourteen research questions were identified and prioritized using a weighted voting system. Although some priorities differed between patient participants and healthcare/research professionals, this process resulted in a consensus-based top 10 PABC research agenda, alongside five key signals aimed at improving clinical care.

This PSP identified critical evidence gaps across biological, clinical, and psychosocial domains in PABC. The resulting research agenda underscores the need for multidisciplinary and patient-informed research approaches to advance knowledge and improve care for women affected by PABC and their families.