Abstract
Patient-centered care focuses on aligning healthcare with a person's values and preferences to support their health and life goals. This approach is especially crucial among adolescents and young adults (AYAs-with a primary cancer diagnosis between the ages of 18 and 39) facing an uncertain or poor cancer prognosis (UPCP), whose care needs differ from those undergoing curative treatment. This study aims to gain insights from AYAs with a UPCP, their informal caregivers, and healthcare professionals (HCPs) to define optimal patient-centered care and identify barriers to its implementation. We conducted semi-structured interviews with 46 AYAs, 39 informal caregivers, and 49 HCPs from various clinical backgrounds. Findings highlighted the need of AYAs for an equal relationship with HCPs and active involvement in decision-making, alongside tailored information addressing their unique challenges. Informal caregivers expressed the need for information to support patients while preferring a minimal focus on themselves. HCPs noted the necessity for specialized training to meet the specific needs of AYAs with a UPCP, reporting difficulties in providing tailored support due to the disease's uncertainties. This study's results can lead to improved healthcare for this population and enhance educational modules for HCPs, equipping them to better support AYAs facing a UPCP.