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

肿瘤科以患者为中心的护理的信息需求和障碍:EtnobreastHER2,一项针对HER2阳性转移性乳腺癌患者及其医疗保健提供者的民族志研究

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Abstract

INTRODUCTION AND OBJECTIVES: Qualitative evidence regarding the structural barriers embedded in healthcare ecosystems impacting Human Epidermal Growth Factor Receptor 2 metastatic breast cancer (HER2+ MBC) 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 healthcare 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 healthcare 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. CONCLUSION: 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, patient-centric care, these structural barriers must be addressed.

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