It's time to address fear of cancer recurrence in family caregivers: usability study of an virtual version of the Family Caregiver-Fear Of Recurrence Therapy (FC-FORT).

Background: Family caregivers of cancer survivors experience equal or greater levels of fear of cancer recurrence (FCR) than survivors themselves. Some interventions have demonstrated their ability to reduce FCR among cancer survivors and dyads (patient and caregivers). However, to date, no validated intervention exists to focus solely on family caregiver's FCR. Objectives: This study aimed to (1) adapt the evidence-based in-person Fear Of Recurrence Therapy (FORT) for family caregivers (referred here in as FC-FORT) and to a virtual delivery format and (2) test its usability when offered virtually. Methods: The adaptation of FC-FORT was overseen by an advisory board and guided by the Information Systems Research Framework. Following this adaptation, female family caregivers and therapists were recruited for the usability study. Participants took part in 7 weekly virtual group therapy sessions, a semi-structured exit interview and completed session feedback questionnaires. Therapists were offered a virtual training and weekly supervision. Fidelity of treatment administration was assessed each session. Quantitative data were analyzed using descriptive statistics. Exit interviews were transcribed verbatim using NVivo Transcription and coded using conventional content analysis. Results were presented back to the advisory board to further refine FC-FORT. Results: The advisory board (n = 16) met virtually on 7 occasions to adapt FC-FORT (i.e., patient manuals, virtual format) and discuss recruitment strategies. Minor (e.g., revised text, adapted materials to virtual format) and major adaptations (e.g., added and rearranged sessions) were made to FC-FORT and subsequently approved by the advisory board. Four family caregivers and three therapists took part in the first round of the usability testing. Six family caregivers and the same three therapists took part in the second round. Overall, participants were very satisfied with FC-FORT's usability. Qualitative analysis identified 4 key themes: usability of FC-FORT, satisfaction and engagement with content, group cohesion, and impact of FC-FORT. All participants indicated that they would recommend FC-FORT to others as is. Conclusions: Using a multidisciplinary advisory board, our team successfully adapted FC-FORT and tested its usability using videoconferencing. Results from this study indicate that the efficacy and acceptability of FC-FORT are now ready to be tested in a larger pilot study.

A new landscape in illness uncertainty: A systematic review and thematic synthesis of the experience of uncertainty in patients with advanced cancer receiving immunotherapy or targeted therapy.

OBJECTIVE: Over the past 20 years, immunotherapy and targeted therapy (TT) have been extending the life expectancy and providing hope for a growing number of patients with advanced and metastatic cancer. However, the efficacy, side effects, and overall prognosis of these treatments are highly unpredictable. Recent research suggests that these patients may be experiencing significant uncertainty which impacts their functioning. This study reviewed the literature on the experiences of uncertainty for individuals with advanced or metastatic cancer patients who are receiving immunotherapy or TT. METHOD: A systematic literature review was conducted. Data was extracted from studies by pairs of reviewers. Literature quality was appraised using the Critical Appraisal Skills Program checklist. Following data extraction, thematic synthesis was used to summarize findings across studies and generate overarching themes. RESULTS: Fifteen qualitative studies were included. Findings highlighted impacts of various sources of uncertainty (financial, emotional, social), unmet needs related to uncertainty (practical, informational, communication), and recommendations for the management of uncertainty. Clinical implications and study limitations were indicated. CONCLUSIONS: Findings were situated within Mishel's Uncertainty in Illness Theory and the literature on supportive care for advanced cancer populations. Recommendations related to improving healthcare provider communication and balancing hope and expectations for treatment outcomes were highlighted. Further research is needed to investigate experiences of uncertainty in this population. Tailored interventions for uncertainty may be warranted.

A systematic mixed studies review of fear of cancer recurrence in families and caregivers of adults diagnosed with cancer.

PURPOSE: Fear of cancer recurrence (FCR) may be equally prevalent, persistent and burdensome in cancer caregivers as in survivors. This systematic review evaluated FCR prevalence, severity, correlates, course, impact and interventions in cancer caregivers. METHODS: Electronic databases were searched from 1997 to May 2021. Two reviewers identified eligible peer-reviewed qualitative or quantitative studies on FCR in adult caregivers or family members of adult cancer survivors. The risk of bias was assessed using the Cochrane Risk of Bias tools for randomised and non-randomised studies and the Mixed-Methods Appraisal Tool. A narrative synthesis and thematic synthesis occurred on quantitative and qualitative studies, respectively. RESULTS: Of 2418 papers identified, 70 reports (59 peer-reviewed articles, 11 postgraduate theses) from 63 studies were included. Approximately 50% of caregivers experienced FCR. Younger caregivers and those caring for survivors with worse FCR or overall health reported higher FCR. Most studies found caregivers' FCR levels were equal to or greater than survivors'. Caregivers' FCR was persistently elevated but peaked approaching survivor follow-up appointments. Caregivers' FCR was associated with poorer quality of life in caregivers and survivors. Three studies found couple-based FCR interventions were acceptable, but had limited efficacy. CONCLUSIONS: FCR in caregivers is prevalent, persistent and burdensome. Younger caregivers of survivors with worse overall health or FCR are at the greatest risk. Further research on identifying and treating caregivers' FCR is required. IMPLICATIONS FOR CANCER SURVIVORS: Caregiver and survivor FCR are similarly impactful and appear interrelated. Addressing FCR may improve outcomes for both cancer caregivers and survivors.