Louise Sharpe

A Double‐Blind Randomized Sham‐Controlled Trial of Two Online Cognitive Bias Modification Interventions for Fear of Cancer Recurrence in People With Breast or Ovarian Cancer

ABSTRACT Objective In the context of cancer, pain demands interpretation. Our research has found that fear of cancer recurrence (FCR) is associated with the tendency to interpret ambiguous information as health‐related. We aimed to determine whether we could modify these interpretation biases to improve FCR, and pain outcomes. Methods We conducted a double‐blind randomized controlled trial comparing two fully automated Cognitive Bias Modification for Interpretation (CBM‐I) programs to a matched sham. We randomized 174 people with breast or ovarian cancer to one of three groups (pain‐related CBM, cancer‐specific CBM or sham). Participants completed four training sessions, and outcomes were assessed before and after intervention and 2 weeks later. We nominated co‐primary outcomes as FCR and fear of progression (FoP) so that measures were suited to those with and without active disease and measured pain outcomes and other secondary psychosocial outcomes. Results We analyzed data using mixed‐model linear regression and intention‐to‐treat. Results indicated that both the cancer‐specific and pain‐related training groups showed significant improvements in FCR ( F (2,440)  = 17.19, p  < 0.0005) and FoP ( F (2,440)  = 15.03, p  < 0.0005) over time compared to sham. Both versions of CBM were associated with benefits in pain intensity ( F (2,440)  = 6.14, p  < 0.0005) and pain interference ( F (2,440)  = 5.223, p  = 0.001) compared to sham. No other secondary outcomes improved. Conclusion CBM for interpretation is an efficacious treatment for FCR, FoP and pain outcomes in ovarian and breast cancer. This intervention was delivered wholly online, had high completion rates (80%) and therefore is highly scalable. CBM‐I could be part of a stepped care model to meet the large unmet need for people who are living with and beyond cancer.

Development and validation of the CARE‐FCR: A caregiver‐specific measure of fear of cancer recurrence and progression

AbstractObjectivesFear of cancer recurring or progressing (FCR) is a concern reported by people living with cancer and caregivers alike. Whilst advances in survivor FCR have been made, less is known about caregiver FCR. As a result, measurement of caregiver FCR has relied on instruments developed for survivor populations. Findings from qualitative research indicate caregiver experiences of FCR differ. This study aimed to develop and evaluate the psychometric properties of a caregiver specific measure of FCR (CARE‐FCR).MethodsFour‐hundred and thirty‐eight caregivers (56% female, Mage = 50.53 years, SD = 17.38) completed the online survey including demographic questions, information about care provided, the person they care for, as well as the CARE‐FCR. Convergent validity was assessed using pre‐existing measures of fear of recurrence and progression, depression, anxiety, death anxiety and meta‐cognitions. The extraversion dimension of the Big Five Personality Trait questionnaire was used to assess divergent validity. The survey was completed 2 weeks later to assess test‐retest reliability. Exploratory factor analysis (EFA) was used to determine factor structure, followed by confirmatory factor analysis.ResultsEFA indicated a 3‐factor structure: progression, recurrence, and communication. Evidence for convergent, divergent, and test‐retest reliability was adequate. Internal consistency for the CARE‐FCR was strong, overall Cronbach's α = 0.96 (progression = 0.94, recurrence = 0.92 and communication = 0.78).ConclusionsWe present a theoretically informed and psychometrically robust measure of caregiver FCR. The CARE‐FCR facilitates quantification of caregiver FCR, capturing unique aspects specific to this population.

Fear of cancer recurrence in ovarian cancer caregivers: A qualitative study

AbstractAimAlthough there is growing research exploring survivor fear of cancer recurrence (FCR), little is known about caregiver FCR. To date, examination of caregiver FCR has largely been conducted through the lens of survivor conceptualisations, limiting the development of caregiver‐specific models, measures, and interventions. This study aimed to explore experiences of FCR among caregivers of people with ovarian cancer.MethodsSemi‐structured telephone interviews were conducted with caregivers of people with ovarian cancer. Participants, recruited through Ovarian Cancer Australia, also completed an online survey collecting participant and patient demographic characteristics, information about the survivor's disease and caregiver levels of FCR using the Fear of Cancer Recurrence Inventory (Caregiver) (FCRI‐c). Qualitative interviews explored caregiver fears, how fears and concerns were experienced and the frequency and timing of FCR. Thematic analysis using a Framework Approach was used to analyse the results.ResultsTwenty‐four caregivers (54% male) participated in an interview. Most caregivers were providing care for their partner (n = 14). Thematic analysis identified four inter‐related themes and associated sub‐themes: (1) Fear and uncertainty; (2) Liminality; (3) Hopelessness and (4) Caregiver's protection of the person and self (caregiver's role as protector). Underpinning these themes was an overarching fear of one's family member dying.ConclusionsCaregivers supporting people with ovarian cancer experience worries and concerns related to cancer recurrence or progression. These experiences are conceptually different to survivor experiences. Fear of one's family member dying, and the dual nature of caregiver protection/self‐protection mean it is imperative that interventions are tailored specifically to caregiver needs. Future research facilitating the development of appropriate measures and interventions is essential to reduce caregiver FCR.

Death anxiety predicts fear of Cancer recurrence and progression in ovarian Cancer patients over and above other cognitive factors

AbstractDeath anxiety is understudied in people with cancer, especially in relation to fear of cancer recurrence (FCR) and fear of progression (FOP). The present study aimed to identify if death anxiety can predict FCR and FOP over and above other known theoretical predictors. One hundred and seventy-six participants with ovarian cancer were recruited for an online survey. We included theoretical variables, such as metacognitions, intrusive thoughts about cancer, perceived risk of recurrence or progression, and threat appraisal, in regression analyses to predict FCR or FOP. We investigated whether death anxiety added to the variance over and above these variables. Correlational analyses demonstrated that death anxiety is more strongly associated with FOP than FCR. The hierarchical regression including the theoretical variables described above predicted 62–66% of variance in FCR and FOP. In both models, death anxiety predicted a small but statistically significant unique variance in FCR and FOP. These findings draw attention to the importance of death anxiety in understanding FCR and FOP in people with a diagnosis of ovarian cancer. They also suggest that elements of exposure and existentialist therapies may be relevant in treating FCR and FOP.

The impact of ovarian cancer on individuals and their caregivers: A qualitative analysis

AbstractObjectiveOvarian cancer remains an understudied cancer with poor prognosis, few effective treatments and little understanding of the how individuals and their families face the challenges and uncertainty following diagnosis. This study synthesized the subjective experiences of individuals and their caregivers in the face of the uncertainty produced by the disease.MethodsQualitative data were obtained from the Ovarian Cancer Australia 2017 Consumer Survey. An inductive thematic analysis was conducted on responses from 219 individuals with ovarian cancer and 78 caregivers.ResultsNine themes were identified from the individual's responses and seven themes from the caregivers. For both groups, the uncertainty created at diagnosis led to a cascade of complex responses. For the individuals, uncertainty gave rise to fears for the future, which were exacerbated by unmet healthcare needs or treatment‐related difficulties. For some individuals, these fears led to disruption to their lives, isolation and emotional distress. For others, helpful coping styles and social support protected them from these negative consequences. For caregivers, the processes were similar, but uncertainty predominantly led to feelings of hopelessness and “survivor guilt.”ConclusionsOur results identified processes that may guide future interventions and research targeting unmet needs and protective factors for individuals with ovarian cancer and their caregivers. Findings also suggest the potential to facilitate effective support between individuals and their caregivers.

The role of interpretation biases and symptom burden in fear of cancer recurrence/progression among ovarian cancer survivors

AbstractBackgroundModels of fear of cancer recurrence or progression (FCR/P) suggest that the way in which people interpret ambiguous physical symptoms is an important contributor to the development and maintenance of FCR/P, but research has not investigated this claim. The aim of this study is to fill that gap.MethodsThis was a cross‐sectional study. Sixty‐two women with ovarian cancer reported completed measures of FCR/P, an interpretation bias task and a symptom checklist. The healthy control group (n = 96) completed the interpretation bias task.ResultsWomen with ovarian cancer were more likely to interpret ambiguous words as health‐related compared to healthy women (p < 0.001; Cohen's d = 1.28). In women with cancer, FCR/P was associated with overall symptom burden (r = 0.25; p = 0.04) and interpretation bias score (r = 0.41; p = 0.001), but interpretation bias and symptom burden were not related (r = 0.22; p = 0.09). Interpretation bias did not moderate the relationship between symptoms and FCR/P.ConclusionsWe found that women with ovarian cancer interpreted ambiguous words as health related more often compared to women without cancer, and this bias was greater for women with higher FCR/P. Symptom burden was also associated with FCR/P. However, interpretation bias did not moderate the relationship between physical symptoms and FCR/P. Hence, the central tenet of the Cancer Threat Interpretation model was not supported in women with ovarian cancer.