Perspectives of patients, partners, primary and hospital-based health care professionals on living with advanced cancer and systemic treatment

Purpose: An emerging group of patients lives longer with advanced cancer while receiving systemic treatment. This study aimed to investigate psychosocial aspects of living longer with advanced cancer, and experiences with psychosocial care, from the perspectives of patients, partners, and health care professionals (HCPs).

Methods: From May to December 2020, participants were purposively selected. In-depth, semi-structured interviews were conducted by video or phone call, containing open questions regarding psychosocial aspects and psychosocial care in oncology. The data was analysed following thematic analysis, leading to overarching psychosocial themes and indications for optimal organisation of psycho-oncological care.

Results: Fifteen patients, seven partners and eleven HCPs were interviewed. The main psychosocial aspects were increasing loss in several life domains, complexity of making life choices, ongoing uncertainty, and fluctuating fear and hope. Partners were affected by their loved ones' condition and reported to put themselves second for longer periods of time, while sometimes missing adequate support. HCPs were challenged by addressing the altering psychosocial needs of patients, and tools to identify those in need for psychosocial support are currently lacking.

Conclusions: Living longer with advanced cancer presents unique challenges for patients and their partners, as well as for HCPs in delivering optimal psychosocial care.

Implications for cancer survivors: Identifying and addressing patients' psychosocial needs from an early stage on, appointing a central hospital-based contact person, limiting the waiting time between scans and consultations, and addressing the partners' wellbeing are suggestions to organise optimal psychosocial support in advanced cancer.