European Society of Breast Cancer Specialists/Advanced Breast Cancer Global Alliance quality indicators for metastatic breast cancer care.

AIMS: Improvement in the care of patients with metastatic breast cancer (MBC) can only occur if the adequate quality of care is implemented and verified, including access to multidisciplinary, specialised care given in accordance with high-quality guidelines. To this purpose, European Society of Breast Cancer Specialists and the Advanced Breast Cancer Global Alliance joined efforts to develop the first set of quality indicators (QI) specifically for MBC that should be routinely measured and evaluated to ensure that breast cancer centres meet the required standards. METHODS: A working group of multidisciplinary European experts in breast cancer met to discuss each identified QI, reporting the definition, the minimum and target standard for breast cancer centres to achieve, and the motivation for selection. The level of evidence was determined according to the short version of the United States Agency for Healthcare Research and Quality classification. RESULTS: QI to measure access to and involvement in multidisciplinary and supportive care, appropriate pathological characterisation of disease, systemic therapies and radiotherapy were developed with the consensus of the working group. CONCLUSIONS: This is the first effort of a multistep project that aims to have QI for MBC routinely measured and evaluated to ensure that breast cancer centres achieve mandated standards in the care of patients with metastatic disease.

A multi-stakeholder approach in optimising patients' needs in the benefit assessment process of new metastatic breast cancer treatments.

There is a growing understanding as science evolves that different cancer types require different approaches to treatment evaluation, especially in the metastatic stages. The introduction of new metastatic breast cancer (MBC) treatments may be hindered by several elements, including the availability of relevant evidence related to disease-specific outcomes, the benefit assessment process around the evaluation of the clinical benefit and the patients' need of new treatments. The Steering Committee (SC) found that not all issues relevant to MBC patients are consistently considered in the current benefit assessment process of new treatments. Among these are overall survival, time-to-event endpoints (e.g. progression-free survival), patients' priorities, burden of disease, MBC-specific quality of life, value in delaying chemotherapy, route of administration, side effects and toxicities, treatment adherence and the benefit of real-world evidence. This paper calls on decision makers to (1) Include MBC-specific patient priorities and outcomes in the overall benefit assessments of new MBC treatments; (2) Enhance multi-stakeholder collaboration in order to improve MBC patient outcomes.

Putting words into practice.

Many ABC/MBC (advanced or metastatic breast cancer) patients describe feelings of isolation and lack of support [1], often exacerbated by inadequate and insensitive communication. To examine these issues and the changing landscape of the wider breast cancer (BC) community, eight BC patients from across Europe took part in an advisory board. Each patient generously gave up their time to discuss how communication could be enhanced; driven by a desire to improve the experience and bolster support for future ABC/MBC patients. The most powerful and touching message emerged; maintaining the feeling of hope was vitally important as was the knowledge they were not alone in their diagnosis, with patient-to-patient communication representing an important 'lifeline'. It transpired that patients found certain language difficult, confusing and shocking to deal with, particularly as their disease journey was very much an emotional rather than clinical one. For those communicating with ABC/MBC patients, adopting an empathic, patient and personalized language and approach was considered invaluable. Here we examine further the key findings of the advisory board to help shape how, step-by-step, we can change the language we use in practice to effectively and sensitively communicate with ABC/MBC patients.