PREGNANCY-associated breast cancer research priorities reveal urgent biological, clinical, and psychosocial gaps in patient care.
A new patient-centered research agenda has identified the most pressing unanswered questions in pregnancy-associated breast cancer, a rare but increasingly prevalent condition marked by diagnostic delay, distinct tumor biology, and complex clinical and psychosocial challenges.
The priority-setting partnership brought together patients with pregnancy-associated breast cancer, healthcare professionals, and researchers in the Netherlands to define research questions that better reflect lived experience and clinical need. The process was designed to address gaps that remain insufficiently represented in contemporary breast cancer research agendas.
Patients and Clinicians Shape Research Priorities
Four focus group sessions were conducted with seven patients, four healthcare professionals, and three researchers. Sessions were facilitated by an independent moderator using Socratic dialogue techniques, allowing participants to explore lived experiences and translate those concerns into research questions.
A broader sounding board, consisting of 12 patients and four clinicians, then contributed to the prioritization process. Research questions were submitted, discussed, and ranked through a structured weighted voting system.
This approach generated 14 research questions, which were narrowed into a consensus-based top 10 pregnancy-associated breast cancer research agenda. While patient participants and healthcare or research professionals differed on some priorities, the final agenda reflected shared concern across biological, clinical, and psychosocial domains.
Evidence Gaps Extend Beyond Tumor Biology
The findings underscore that pregnancy-associated breast cancer requires more than tumor-focused investigation. The condition creates challenges across diagnosis, treatment, family life, pregnancy, survivorship, and psychosocial care, making multidisciplinary and patient-informed research essential.
Alongside the top 10 research agenda, the process identified five key signals aimed at improving clinical care. These signals point to practical needs that may be addressed while longer-term research questions are pursued.
For clinicians, the findings reinforce the importance of listening to patients with pregnancy-associated breast cancer and recognizing that research priorities may differ between patients and professionals. Greater alignment between scientific investigation and lived experience could help improve knowledge, care pathways, and support for women affected by pregnancy-associated breast cancer and their families.
Reference
Bakhuis CFJ et al. Towards patient-centered research in pregnancy-associated breast cancer: creating a science agenda through a priority-setting-partnership. Breast. 2026;88:104808.
Featured Image: Viacheslav Yakobchuk on Adobe Stock.
