Information needs and barriers to patient-centered care in oncology: EtnobreastHER2, an ethnographic study with HER2+ MBC patients and their healthcare providers

José Ángel García-Sáenz^1*Álvaro Rodríguez-Lescure²Silvia Antolin Novoa³Blanca Cantos⁴Miguel Ángel Seguí⁵María Antonia Gimón⁶Raül Rubio Renau⁷Carlota Solà Marsiñach⁷Jesús Martín Illán⁸Rocío Fonseca Vallejo⁸Yaiza Gimeno Guadalupe⁹Noelia Alfaro Oliver⁹Joaquín Gavilá¹⁰

• ¹Hospital Ruber Internacional, Madrid, Spain
• ²Department of Medical Oncology, University General Hospital of Elche, Elche, Spain
• ³A Coruña University Hospital Complex (CHUAC), A Coruña, Spain
• ⁴Department of Medical Oncology, Puerta de Hierro University Hospital Majadahonda, Majadahonda, Spain
• ⁵Parc Taulí University Hospital, Sabadell, Spain
• ⁶Spanish Federation of Breast Cancer FECMA, Santander, Spain
• ⁷A Piece of Pie S.L., Barcelona, Spain
• ⁸Daiichi Sankyo Spain, Madrid, Spain
• ⁹AstraZeneca Farmacéutica Spain, Madrid, Asturias, Spain
• ¹⁰Instituto Valenciano de Oncologia, Valencia, Spain

Introduction and Objectives: Qualitative evidence regarding the structural barriers embedded in healthcare ecosystems impacting Human Epidermal Growth Factor Receptor 2 (HER2+ MBC) metastatic breast cancer patients' communication and information needs is scarce. This study explored patient and healthcare professionals' perspectives on said structural barriers and communication delivery. Methods: Ethnographic, qualitative, observational, multicenter and cross-sectional study with HER2+ MBC patients and Health Care Professionals. Qualitative data collected through remote semi-structured interviews with patients (n=14) and Health Care Professionals (n=10). The European Organization for Research and Treatment of Cancer Quality of Life Questionnaire (EORTC QLQ)-C30 and the disease-specific EORTC QLQ-BR45 questionnaires were collected as Quality of Life measures.Results: Regarding the communication and information needs of patients, there were four areas these were lacking most: 1) disease and treatment, 2) psychosexual support, 3) navigation of the healthcare and social security systems to reduce the financial burdens, and 4) patient associations. In reference to delivery of information from Health Care Professionals, there were four areas that were lacking: 1) time, 2) interpersonal skills and communications training, 3) specialized oncology nursing training, and 4) lack of an evaluation system assessing patient-centered care and patient satisfaction.Results emphasize how structural barriers embedded in healthcare systems can lead to and intensify information and communication gaps, which therefore emphasizes that to provide optimal, patientcentric care, these structural barriers must be addressed.