Patients and Oncologists Often Misaligned on Treatment Talks in Advanced Breast Cancer

A large multicountry survey has revealed a striking paradox at the heart of advanced breast cancer care: patients overwhelmingly want a say in their treatment, and oncologists overwhelmingly want to give them one, yet the two groups consistently disagree on what matters most, what should be discussed, and who should be in the room. The study, published in BMC Cancer, surveyed both postmenopausal patients with hormone receptor-positive (HR+), HER2-negative locally advanced or metastatic breast cancer and the oncologists treating them across France, Italy, and Spain, offering one of the most detailed comparative portraits to date of how shared decision-making actually functions in this setting.

The clinical context explains why these conversations matter so much. HR+/HER2-negative disease accounts for roughly seventy percent of all breast cancer cases, and when it progresses to locally advanced or metastatic stages, treatment shifts from curative intent toward long-term disease control. Patients may cycle through lines of endocrine therapy, targeted agents such as CDK4/6 inhibitors, and other systemic treatments for years, meaning that quality of life, side-effect burdens, and daily convenience become central concerns rather than afterthoughts. In that landscape, shared decision-making, in which clinician and patient jointly weigh options against the patient’s values and circumstances, is widely endorsed as best practice. Whether it actually happens, and how well, has been far harder to measure.

The research team, led by Alessandra Fabi of Fondazione Policlinico Universitario A. Gemelli IRCCS in Rome and including investigators from institutions across France, Italy, Spain, and Germany, designed a quantitative, cross-sectional survey to capture both perspectives simultaneously. Participants answered structured questions covering several domains: patients’ knowledge of and interest in targeted therapies; their preferred level of involvement in treatment decisions; communication about efficacy and side effects; recognition of adverse events affecting quality of life, distinguishing patient-reported symptoms from clinically detected findings; and preferences regarding how treatments are administered. Ethics committees at the University of Ulm in Germany and Hospital Clínico San Carlos in Spain approved the protocol, and all participants gave informed consent, with the study conducted under the Declaration of Helsinki and Good Clinical Practice standards.

The enthusiasm patients expressed for targeted therapies came with a major knowledge gap. Fewer than sixty-nine percent of patients said they were willing to undergo additional biopsy testing and to try targeted treatments, an encouraging signal of openness to precision oncology approaches. Yet seventy-six percent of the same patients reported having limited knowledge about what these therapies actually are or how they work. That combination, high willingness paired with low understanding, is precisely the scenario in which informed consent becomes fragile, since patients may agree to interventions they cannot meaningfully evaluate. The authors argue that communication about targeted therapies represents one of the clearest unmet needs identified by the survey.

On the question of who should decide, the results were emphatic. Sixty-eight percent of patients wanted full involvement in shared decision-making, and a further twenty percent wanted at least partial involvement, leaving only a small minority content to delegate decisions entirely to their physicians. The social dimension of these decisions was equally striking: fifty-six percent of patients wanted family members to participate in the process. By contrast, few patients saw a formal role for psychologists, at nine percent, or nurses, at six percent, with nurse involvement expressed mostly in France. This suggests that patients conceptualize decision-making as a family-centered process rather than a multidisciplinary clinical one, even though clinical guidelines often emphasize the supportive contributions of the wider care team.

Oncologists, for their part, reported practices that largely align with this patient-centered ideal, but with notable exceptions. Seventy-nine percent of physicians said they involved patients and their families or caregivers in decisions, a pattern especially pronounced in Italy and Spain. Interestingly, the physicians placed far more value on psychological and nursing support than patients did, with over seventy-eight percent considering these services important. The mismatch cuts both ways: patients underuse supportive resources their doctors consider valuable, while doctors may underestimate the family’s role that patients consider essential. Both observations point to a need for explicit discussion of support structures during treatment planning, rather than assuming either party knows what the other wants.

When it came to ranking what matters in choosing a treatment, the two groups converged on the big survival endpoints but diverged elsewhere. Both patients and oncologists prioritized overall survival and progression-free survival, the standard measures of how long patients live and how long the disease is controlled. Patients, however, additionally ranked treatment-related side effects as a priority at the moment of choosing a therapy, a weighting oncologists did not mirror. The communication data reinforced the asymmetry: physicians reported routinely sharing information on safety and expected adverse events, but far less frequently discussing efficacy outcomes in detail. In other words, the conversations happening most often are about side effects, while the conversations patients may value just as much, about how well a treatment is expected to work, occur less reliably.

Perhaps the most clinically instructive finding concerned adverse events and quality of life. Physicians identified gastrointestinal adverse events as the toxicities with the greatest impact on patients’ quality of life, yet these events were actually experienced by few patients in the survey population. This perception gap, in which clinicians weight a symptom class they see as consequential even when patients rarely report it, illustrates how clinician estimates of patient burden can drift from patient-reported reality. The distinction the researchers drew between patient-reported symptoms and clinically detected findings is important here, because the two frequently do not correlate: a laboratory abnormality visible to the oncologist may trouble the patient far less than fatigue, sleep disruption, or digestive discomfort that never appears in the chart.

One area of rare harmony was treatment administration. Both groups preferred oral treatments over intravenous or other clinic-based options, though for complementary reasons. Patients cited the convenience of receiving therapy at home, avoiding travel and preserving daily routines, while clinicians valued the reduction in clinic visits, which eases scheduling burdens and healthcare resource use. Given that many modern agents for HR+/HER2-negative disease, including targeted combinations built around endocrine therapy, are available in oral formulations, this shared preference has practical implications for how treatment pathways are designed and how adherence support is structured, since oral regimens shift responsibility for consistent dosing from clinic to household.

The survey’s cross-country comparisons add a further layer, revealing meaningful differences among France, Italy, and Spain in patterns of family involvement, nurse participation, and communication practices, underscoring that shared decision-making is not a uniform, culture-free protocol but a practice shaped by local healthcare systems and social norms. The authors conclude that communication about targeted therapies, treatment effectiveness, and adverse events all require improvement, and that nursing and psychological support deserve a more prominent place in decision-making discussions. The study was sponsored by Menarini Stemline, with writing assistance funded by the same company, factors readers should weigh alongside the findings. Even so, the central message stands on its own: in advanced HR+/HER2-negative breast cancer, the will to share decisions exists on both sides of the consultation table, but aligning what patients know, what doctors discuss, and what both consider important will require deliberate, structured change.

Subject of Research: Shared decision-making and treatment communication between patients and oncologists in HR+/HER2-negative advanced breast cancer

Article Title: Patients’ and oncologists’ perspectives on shared decision-making and treatment communication in HR+/HER2 − advanced breast cancer: a multicountry survey

Article References: Fabi, A., Botticelli, A., Cinieri, S., Freyer, G., García-Sáenz, J. A., Guerrero-Zotano, A., Janni, W., Massarrah Sánchez, T., Reverdy, T., Untch, M., & Péron, J. (2026). Patients’ and oncologists’ perspectives on shared decision-making and treatment communication in HR+/HER2 − advanced breast cancer: a multicountry survey. BMC Cancer. https://doi.org/10.1186/s12885-026-16578-y

Image Credits: AI Generated

DOI: 10.1186/s12885-026-16578-y

Keywords: advanced breast cancer, HR+/HER2-negative, shared decision-making, oncology communication, targeted therapies, patient-reported outcomes, quality of life, adverse events, oral treatment, multicountry survey, patient-centered care, Patients