Aims: While the official definition combines fear of cancer recurrence (FCR) with fear of progression (FOP), recent studies indicate that they are distinct constructs. Given this, interventions that support individuals with metastatic cancer, where the cancer may continue to progress, need to be co-designed accordingly. Yet FCR/FOP interventions developed to date (a) have nearly exclusively focused on early-stage cancer survivors, and (b) have been intensive in nature and delivered by a highly specialized psychologist workforce, reducing accessibility. Our group sought to address some of these gaps by adapting our self-directed intervention for early-stage cancer, Finding My Way (FMW), to be appropriate for those with metastatic breast cancer (MBC): Finding My Way-Advanced (FMW-A).
Methods: Women with MBC participated in one of three iterative co-design phases: (1) User needs and requirements identification: through surveys (n=49), and semi-structured interviews (n=15) where women were provided access to the original FMW as a scenario/example, and asked for feedback; (2) Prototype usability evaluation: through a think-aloud protocol (n=8) where participants were given access to the adapted FMW-A and tested each program component; and (3) Final design - feasibility testing: through a pilot RCT of FMW-A (n=35).
Results: FOP was the top ranked concern in phase 1; managing FOP thus became a focus of ‘The Unique Challenges’ module of FMW-A. Pilot RCT results yielded small but promising results for reducing FOR (d=.16) and cancer-specific distress (d=.20). However, general distress (d=.45) and mental QOL (d=.46) worsened, but only among those with low engagement.
Conclusions: This study highlights the importance of co-designing tailored interventions for metastatic populations, where FOP was seen as very distinct from FCR. Women with MBC want content, and coping strategies, for living well with a cancer that will eventually progress. Findings from the pilot RCT will inform the next iteration of the intervention.