A research agenda for fear of cancer recurrence: A Delphi study conducted in Australia

Abstract

Objective: Fear of cancer recurrence (FCR) is common, debilitating, and costly to the health system. While there has been a rising trajectory in FCR-related research, there remain many unanswered questions. A research agenda is required to clarify priorities and ensure that research dollars and effort are expended wisely. This study aimed to elicit research topics and priorities from clinical and academic experts in FCR.Methods: Phase 1 consisted of elicitation by survey of prioritised FCR research topics from 20 members of the Psycho-Oncology Co-operative Research Group (PoCoG) FCR special interest group, followed by a focus group discussion with 28 clinicians, researchers, and cancer survivors, at which survey results were presented and further reflection was encouraged. This resulted in 28 research topics that were then subjected to a Delphi process to establish consensus (phase 2).Results: Thirty-one participants completed round 1 of the Delphi process and 23 round 2, after which satisfactory consensus was reached. Five broad areas of research were identified as priorities. In rank order, they were (1) intervention models; (2) definition, predictors, and outcomes of FCR; (3) detection and screening;(4) training for health professionals; and (5) reaching specific populations.Conclusions: It is hoped that the current findings will guide FCR researchers towards clinically relevant, significant research that will move the field forward.Experts nominated intervention research as the top priority, specifically exploring optimal formats of delivery including stepped care and blended models incorporating online or phone elements to increase accessibility. KEYWORDS cancer, Delphi method, fear of cancer recurrence, oncology, research priorities 1 | INTRODUCTION Fear of cancer recurrence (FCR), defined as "fear, worry or concernrelating to the possibility that cancer will come back or progress," 1(p3266) is pervasive among cancer survivors. While some degree of FCR among cancer survivors is considered normal, 1 approximately 50% experience moderate to high FCR levels. 2 High FCR does not appear to diminish over time and is associated with greater psychological distress, impaired quality of life, and increased health care utilisation. 2 While FCR overlaps with other forms of psychological distress, FCR is often an isolated focus of worry in otherwise mentally well individuals. 3 Up to 79% of survivors report an unmet need for

Development and refinement of FoRtitude: An eHealth intervention to reduce fear of recurrence among breast cancer survivors

“…The small sample size limits definitive confirmation of qualitative themes, which may not be generalizable beyond female BCS. Results support the feasibility of CBT‐based targeted FoR eHealth interventions to address FoR, thus are aligned with FoR research priorities . Results indicate intervention models need to accommodate individual preferences, including technology‐enabled interactions among BCS regarding FoR.…”

“…Fear of cancer recurrence (FoR) is common and eHealth intervention research targeting FoR has been identified as a priority . User‐based approaches for eHealth intervention development increase usability, adherence, and efficacy .…”

Integrating fear of cancer recurrence screening into routine care: opportunities and challenges

“…Multiple interventions have demonstrated efficacy in addressing FCR, 2 but rigorously validated ultra‐brief (i.e., <5 items and 2 min to complete) 3 FCR screening tools that can be used to identify people living with cancer requiring intervention in routine care have been lacking. Improvement of FCR screening has been identified as one of the top three FCR research priorities 4 . This commentary outlines the case for FCR screening and ways of building on the initial validation of an ultra‐brief FCR measure, the single‐item FCR‐1, recently published in Psycho‐Oncology 5 …”

“…Improvement of FCR screening has been identified as one of the top three FCR research priorities. 4 This commentary outlines the case for FCR screening and ways of building on the initial validation of an ultra-brief FCR measure, the single-item FCR-1, recently published in Psycho-Oncology. 5 Despite its prevalence, FCR is commonly under-recognised and/ or not asked about in routine cancer care.…”

“The danger still hangs over my head” Fear of Recurrence among Israeli Breast Cancer Survivors

“…Fear of cancer recurrence is defined as fear or concern that the cancer will return or progress in the same or another organ (1). Studies indicate that even after completing their primary treatment and being declared cancer free, breast cancer survivors continue to live with the cancer experience and harbor anxious and fearful thoughts about disease recurrence (2)(3)(4)(5)(6)(7). The incidence of breast cancer recurrence is 10.4% in the first 5 years after chemotherapy (8), but the number of survivors reporting fear of recurrence ranges from 25% to 97% (9)(10)(11)(12)(13)(14).…”