Identification of features of fear of progression in people with advanced cancer and systemic treatment: an international modified Delphi study

Abstract

Abstract 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.