Building Evidence for Advocacy: Improved Services for MBC Patients in Romania

Abstract

Background and context: More than 9000 women are diagnosed each year with breast cancer in Romania and one third of them will develop advanced disease. The metastatic breast cancer (MBC) management aims to optimize disease control while ensuring the best possible quality of life (QoL). In Romania, the new MBC treatments made possible longer survival, but social and psychological support is still extremely limited, and specific guidelines and standards for these services have not been developed. No study regarding distress level, quality of life and specific unmet need of metastatic breast cancer (MBC) patients in Romania was ever carried so no data are available to substantiate introduction of support services for these patients. An evidence based standard of care for support services, based on specific MBC patients needs, has to be developed to ensure an harmonization of support services in Romania. Aim: To improve quality of care for metastatic breast cancer (MBC) patients through the implementation of a standard of care for support services. Strategy/Tactics: The project uses an action research approach that starts with a qualitative study to identify both metastatic breast cancer (MBC) patients' specific needs (regarding information and support services when facing the challenges of diagnosis, treatment, and prognosis) and also their health and social providers' knowledge, experiences and perceptions about MBC. In-depths interviews will be performed with both patients and providers followed by data analysis. Based on the identified needs and literature, specific information materials for metastatic breast cancer (MBC) patients and support services guidelines will be developed. To build support, the materials (the study report, the information materials and the guidelines) will be disseminated among providers and patients through a Web page, a workshop with medical providers representatives from hospitals in the northwest region of Romania, presentation in different scientific events and collaboration with the other cancer patient associations in Romania. A policy proposal regarding the introduction and use of specific support services guidelines within the standard of care for metastatic breast cancer patients in Romania will be developed and presented to the Ministry of Health. Outcomes: An evidence based standard of care for support services and adequate information materials will create a basis for improved service provision for MBC patients; implementing a standard of care in the daily routine of service provision for MBC patients will support health and social providers to ensure better communication and patient empowerment that will have a direct impact on the treatment's efficiency as it increases patients' participation; it will also help MBC patients to better cope with the disease, to make personal decisions regarding treatment options and also to participate to the improvement of their quality of life.