980TiP VOICE- head and neck cancer patient journey’s health literacy needs and experience: Patient, caregivers and healthcare professionals’ perspectives

Abstract

Head and Neck Squamous Cell Carcinoma (HNSCC) patients and caregivers have specific needs due to disease and treatment interfering with daily life activities as eating, speaking and breathing. Advances in therapy are changing the paradigm and a structured approach to recurrent/ metastatic (R/M) HNSCC patients’ journey is needed. This study aims to characterize R/M HNSCC patients’ and caregivers’ health literacy needs and experience throughout the patient journey, while comparing with healthcare professionals (HCPs) perspectives. Cross-sectional, qualitative study, using focus groups methodology on R/M HNSCC patients’ and caregivers’ information needs and experiences, comprising different perspectives – patients, caregivers, and HCPs. Study population will include adult R/M HNSCC patients undergoing 1st line treatment, patients with 2+ treatment lines, caregivers according to patients’ lines of treatment, multidisciplinary team MDT physicians (oncologist, surgeon, radiation oncologist), nurses, psychologist, speech therapist, nutritionist, social worker. Six focus groups (2 with patients, 2 with caregivers, 2 with MDT members), with 6-10 participants each will be held. Focus groups conduction is to start by end-2020. Participants will be identified by steering committee, oncologists from different care settings (university hospitals, general hospitals and cancer institutes) across the country. Study subjects’ selection will be stratified according to pre-specified criteria like gender, education, tumor location to ensure diversity. Signed informed consent will be required for all participants. Outcomes will be descriptive and qualitative, with answers grouped in common themes when possible and no quantitative or subgroup analysis performed. This study may contribute to increase patients and caregivers’ voice regarding treatment morbidity and improved communication practices, treatment adherence, shared treatment decisions and ultimately quality of life. MSD Portugal.