(1) Background: Studies examining the psychosocial impact of living long term on systemic treatment in advanced cancer patients are scarce. This scoping review aimed to answer the research question “What has been reported about psychosocial factors among patients living with advanced cancer receiving life-long systemic treatment?”, by synthesizing psychosocial data, and evaluating the terminology used to address these patients; (2) Methods: This scoping review was conducted following the five stages of the framework of Arksey and O’Malley (2005); (3) Results: 141 articles published between 2000 and 2021 (69% after 2015) were included. A large variety of terms referring to the patient group was observed. Synthesizing qualitative studies identified ongoing uncertainty, anxiety and fear of disease progression or death, hope in treatment results and new treatment options, loss in several aspects of life, and worries about the impact of disease on loved ones and changes in social life to be prominent psychosocial themes. Of 82 quantitative studies included in the review, 76% examined quality of life, 46% fear of disease progression or death, 26% distress or depression, and 4% hope, while few studies reported on adaptation or cognitive aspects. No quantitative studies focused on uncertainty, loss, or social impact; (4) Conclusion and clinical implications: Prominent psychosocial themes reported in qualitative studies were not included in quantitative research using specific validated questionnaires. More robust studies using quantitative research designs should be conducted to further understand these psychological constructs. Furthermore, the diversity of terminology found in the literature calls for a uniform definition to better address this specific patient group in research and in practice.

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.

Background: The growing group of people with advanced cancer and systemic treatment faces psychosocial challenges, including fear of progression (FoP). This study aimed to identify features that characterize FoP in people with advanced cancer and systemic treatment. Methods: An exhaustive list of possible FoP characteristics was generated based on literature, patient-reported outcome measures on FCR and FoP, interview data, and clinical expertise. Members of the International Psycho-Oncology Society (IPOS) Special Interest Group FORwards with expertise in FoP in people with advanced cancer and systemic treatment were invited to score features in a 2-round modified Delphi study. Features were scored on a 5-point Likert scale indicating their importance as a feature of FoP and reached consensus to be included or excluded if more than two-thirds applied the same score. A list of agreed features of FoP was generated. Results: A total of 21 participants completed both Delphi rounds, including psychologists, researchers, nurses, and one psychiatrist. Of the 55 rated features, 31 features reached consensus to be features of FoP in advanced cancer, including items on fear, uncertainty, worry, loss, hopelessness, and interference with daily life. Conclusions: Reaching expert consensus is a critical first step in identifying features of FoP in people with advanced cancer and systemic treatment, highlighting uncertainty and fear of death as unique challenges. Identifying features of FoP in advanced cancer is essential to guide future psycho-oncological research and clinical practice to improve psychosocial guidance with FoP for the growing group of people with advanced cancer and systemic treatment.

Introduction A better understanding of the molecular, genetic and immunological characteristics of cancer and the introduction of new systemic treatment regimens in the last decades, has led to better treatment outcomes and increased survival rates for patients with previously short lived cancers. However, there is no uniform description to refer to this growing group of patients with advanced cancer who now respond to new systemic treatments for longer periods. Furthermore, little is known about the unique psychological challenges these patients face, living with ongoing uncertainty about the course of their disease and life expectancy. The objective of this scoping review is to identify the psychological aspects experienced by, and the definitions used to refer to patients with advanced cancer receiving lifelong systemic treatment. Methods and analysis This review will be among the first to summarise literature on the psychological issues in the growing group of advanced cancer patients undergoing long-term systemic treatment. Articles will be retrieved from six databases (MEDLINE, Embase, Web of Science, PsycINFO, CINAHL and the Cochrane Database of Systematic Reviews) and reviewed for eligibility by two investigators independently. Definitions and psychological challenges will be extracted and narratively summarised following a descriptive approach. Furthermore, results will contribute in providing a uniform definition for this patient group, and help to identify knowledge gaps to give direction to further research in this field. Ethics and dissemination No ethical approval is required. The results of the scoping review will be submitted for publication to a scientific journal and presented at relevant conferences.