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

OBJECTIVES: Fear 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). METHODS: Four-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. RESULTS: EFA 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). CONCLUSIONS: We 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.

Psychological responses during latter rehabilitation and return to sport following ACL reconstruction surgery.

CONTEXT: Despite positive physical outcomes of anterior cruciate ligament reconstruction (ACLR) many athletes do not return to sport following ACLR. OBJECTIVE: To determine if there were differences between athletes who returned to play and those who did not return to sport after ACLR in patterns of psychological responses to injury over the latter course of rehabilitation and return to sport. DESIGN: Case-control study. SETTING: Comprehensive orthopedic medical center referrals. PARTICIPANTS: Thirty-nine recreational and competitive athletes (13-58 years, 21 males) with first ACL tear were observed over the course of the study. MAIN OUTCOME MEASURE: Return to sport. RESULTS: Fifty-two percent of participants returned to play by 9-months post-ACLR. Returners showed a linear decrease in re-injury anxiety from 4- to 9-months post-ACLR while non-returners showed a linear decrease from 4- to 6-months post-ACLR and then a leveling off from 6- to 9-months. Returners showed linear and quadratic effects on perceived limitations to ability with a decrease from 4- to 9- months post-ACLR that accelerated over time while non-returners decreased linearly over time. No significant differences were found between returners and non-returners in knee self-efficacy, perceived percent recovery, and psychological distress. CONCLUSIONS: Results suggest re-injury anxiety and perceived limitations to ability are psychological constructs on which returners and non-returners differ and therefore may be points of intervention to increase the likelihood of return to sport.

Guided versus non-guided digital psychological interventions for cancer patients: A systematic review and meta-analysis of engagement and efficacy.

OBJECTIVE: To evaluate engagement with and efficacy of guided versus non-guided digital interventions targeting psychological symptoms of cancer via a systematic review of current evidence. METHODS: PubMed, Scopus, PsychINFO, MEDLINE, and CINAHL databases were searched. Eligible publications were randomised controlled trials of guided or non-guided digital psychological interventions used in cancer settings reporting intervention efficacy and/or engagement. Study methodological quality was assessed using the Cochrane risk of bias (RoB) tool. Random effects meta-analyses were performed on outcomes with sufficient data, with sub-group analyses of intervention type and follow-up period. RESULTS: Forty-three studies were included. Studies varied by level of guidance, type of technology used, duration, and outcomes assessed. Most studies had a high overall RoB. Meta-analysis indicated that guided interventions significantly reduced distress, anxiety, and fatigue, while non-guided did not. For depression and quality of life, both guided and non-guided interventions produced significant improvements. Guided interventions reported higher levels of intervention engagement than non-guided. CONCLUSIONS: Guided digital psychological interventions were likely to be more effective than non-guided ones for cancer patients, particularly in reducing distress, anxiety, and fatigue. Whilst both types were found to improve depression and life quality, guided interventions were associated with higher patient engagement. These findings suggest digital interventions could supplement traditional cancer care, warranting further research concerning long-term effects and cost-efficiency.

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

AIM: Although 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. METHODS: Semi-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. RESULTS: Twenty-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. CONCLUSIONS: Caregivers 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.

Exploring the experiences and priorities of women with a diagnosis of ovarian cancer.

PURPOSE: Ovarian cancer is the third most common gynaecological cancer among women, yet remains under-researched. Past studies suggest that women who present with ovarian cancer have more supportive care needs compared to women experiencing other gynaecological cancers. This study explores the experiences and priorities of women with a diagnosis of ovarian cancer and whether age may influence these needs and experiences. METHODS: Participants were recruited by a community organization, Ovarian Cancer Australia (OCA), via a social media campaign promoted on Facebook. Participants were asked to rank priorities around living with ovarian cancer, and to endorse which supports and resources they had used to address those priorities. Distributions of priority rankings and resource use were compared by age (19-49 vs. 50+ years). RESULTS: Two hundred and eighty-eight people completed the consumer survey and most respondents were 60-69 years (33.7%). Priorities did not vary by age. Fear of cancer recurrence was identified by 51% respondents as the most challenging aspect of having ovarian cancer. Compared with older respondents, a higher proportion of young participants were more inclined to use a mobile app version of the OCA resilience kit (25.8% vs 45.1%, p=0.002) and expressed interest in using a fertility preservation decision aid (2.4% vs 25%, p<0.001). CONCLUSION: Fear of recurrence was participants' primary concern, presenting an opportunity to develop interventions. Information delivery needs to consider age-specific preferences to better reach the target audience. Fertility is more important to younger women and a fertility preservation decision aid may address this need.

'Sometimes I can't look in the mirror': Recognising the importance of the sociocultural context in patient experiences of sexuality, relationships and body image after ovarian cancer.

OBJECTIVE: Ovarian cancer (OC) can significantly change the way women feel about their body. However, personal accounts regarding these changes are lacking in the literature. Therefore, the aim of this study was to gain an understanding of the ways in which OC can affect relationships, sexuality, womanhood and body image. METHODS: Ninety-eight Australian women aged 18 and over diagnosed with OC completed an online survey that invited narrative responses to open-ended questions about relationships, sexuality, body image and womanhood following OC treatment. Responses were analysed thematically while applying a sociocultural lens. RESULTS: Three themes and two subthemes were identified: Failure and Loss of Femininity and Womanhood, Internalising Public Perception of Body and Illness and Altered Relationships which comprised two subthemes, Loss of the Sexual Self and Relationship Burden. These themes suggest women view themselves and their relationships in comparison with sociocultural understandings of body normalcy. Women often questioned their self-worth, their relationships and place within society due to changes in fertility, sexuality and bodily functioning. CONCLUSION: These results highlight a need for health care professionals to open dialogue with women about sexuality and ensure information and support is given to reduce stigma and positively influence self-perception and increase body acceptance.

Are fear of cancer recurrence and fear of progression equivalent constructs?

BACKGROUND: The predominant definition of fear of cancer recurrence (FCR) conflates FCR with fear of progression (FOP). However, this assumption has never been tested. Importantly, if FCR and FOP are distinct and have different predictors, existing interventions for FCR may not be equally effective for survivors who fear progression rather than recurrence of their disease. The present study aimed to determine whether FCR and FOP are empirically equivalent; and whether they are predicted by the same theoretically derived variables. METHODS: Three hundred and eleven adults with a history of breast or ovarian cancer were analysed (n = 209, 67% in remission). Exploratory factor analysis was conducted on the items of the FCR Inventory severity subscale and short-form FOP Questionnaire together. Structural equation modelling was conducted to predict FCR and FOP and determine whether theoretical models accounted equally well for both constructs, and whether models were equally relevant to those with and without current disease. FINDINGS: The factor analysis demonstrated that the FCR Inventory severity subscale and the short-form FOP Questionnaire loaded onto distinct, but related, factors which represented FCR and FOP. Structural modelling indicated that risk perception and bodily threat monitoring were more strongly associated with FCR than FOP. However, both FCR and FOP were associated with metacognitions and intrusions. INTERPRETATION: These findings suggest that whilst FCR and FOP are related with some overlapping predictors, they are not the same construct. Hence, it is necessary to ensure that in clinical practice and research these constructs are considered separately.

Sexual functioning after ovarian cancer: are women receiving the information and support they need?

Ovarian cancer (OC) can significantly impact sexual functioning beyond initial treatment and into survivorship. However, research suggests that the information and advice women want on this topic may not be readily provided by health professionals (HPs). We explored the psychological and sexual wellbeing of a sample of Australian women diagnosed with OC, to inform the development of effective, targeted sexuality resources. This paper presents a subset of our findings. Participants were recruited nationwide via social media, print advertisement and the database of a support organisation, Ovarian Cancer Australia. Self-reported demographic and clinical survey data were collected including perceptions of the availability and adequacy of sexuality support post-OC. Participants (n = 98) were on average 52.8 years old and 5.5 years post-diagnosis. A minority (22%) reported that the impact of OC on their sexuality was discussed by HPs; and 46% were satisfied with that discussion. Approximately half (52%) had wanted to discuss sexuality concerns with a HP during treatment and 43% still felt the need for this discussion. Open-ended responses revealed the need for more information that was detailed and specified what to expect post-diagnosis. Shortcomings of HPs in addressing sexuality were also revealed. This research provides further evidence that sexual health remains inadequately addressed in OC care across the trajectory for the majority of women, and is an area of unmet need.

Injury-related psychological distress and the association with perceived running ability in injured runners.

OBJECTIVE: Examine injury-related psychological distress and association with perceived running ability in injured runners. DESIGN: Prospective longitudinal study. PARTICIPANTS: Forty-three patients with a running-related injury. MAIN OUTCOME MEASURES: Data collection at initial physical therapy visit and 12-16 weeks later included Optimal Screening for Prediction of Referral and Outcome - Yellow Flag (OSPRO-YF) and Athlete Fear Avoidance Questionnaire (AFAQ) for injury-related psychological distress, and University of Wisconsin Running and Recovery Index (UWRI) for perceived running ability. OSPRO-YF composite score, total yellow flags, and yellow flags in each domain (negative mood, fear-avoidance, positive affect/coping) were calculated. RESULTS: UWRI score and OSPRO-YF composite score and yellow flags significantly improved over time, while AFAQ score and yellow flags in OSPRO-YF negative mood domain did not. AFAQ scores were significantly correlated with UWRI score at baseline, follow-up and change over time, while OSPRO-YF composite score and yellow flags were not. Baseline OSPRO-YF composite score and AFAQ score were not correlated with follow-up UWRI score. CONCLUSIONS: Injury-related psychological distress is elevated when injured runners start rehabilitation, and generally improves; however, negative mood and athletic fear-avoidance may persist. Higher athletic fear-avoidance is associated with lower perceived running ability at the same time point or interval.

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

BACKGROUND: Models 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. METHODS: This 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. RESULTS: Women 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. CONCLUSIONS: We 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.

Is a Brief Online Booklet Sufficient to Reduce Fear of Cancer Recurrence or Progression in Women With Ovarian Cancer?

Background: Fear of cancer recurrence or progression (FCR/P) is a common challenge experienced by people living with and beyond cancer and is frequently endorsed as the highest unmet psychosocial need amongst survivors. This has prompted many cancer organizations to develop self-help resources for survivors to better manage these fears through psychoeducation, but little is known about whether they help reduce FCR/P. Method: We recruited 62 women with ovarian cancer. Women reported on their medical history and demographic characteristics and completed the Fear of Progression Questionnaire-Short Form (FoP-Q-SF). They then read a booklet on FCR specifically created for Ovarian Cancer Australia by two of the authors (ABS and PB). One week after reading the booklet, 50/62 women (81%) completed the FoP-Q-SF and answered questions about their satisfaction with the booklet. Results: More than half of the women (35/62; 56.5%) scored in the clinical range for FCR/P at baseline. Of the completers, 93% said that they would recommend the booklet to other women. Satisfaction with the booklet was relatively high (75.3/100) and more than two-thirds of women rated it as moderately helpful or better. However, FCR/P did not change significantly over the week following reading the booklet [t (49) = 1.71, p = 0.09]. There was also no difference in change in FCR/P between women in the clinical vs. non-clinical range on the FoP-Q. Women high in FCR/P rated the booklet as less helpful in managing FCR/P (r = -0.316, p = 0.03), but overall satisfaction with the booklet was not associated with degree of FCR/P (r = -0.24, p = 0.10). Conclusions: These results suggest that a simple online FCR booklet is acceptable to women with ovarian cancer and they are satisfied with the booklet, but, it was insufficient to change in FCR/P levels. These results suggest that such resources are valued by women with ovarian cancer, but more potent interventions are necessary to reduce FCR in this population.

Autocrine and paracrine interferon signalling as 'ring vaccination' and 'contact tracing' strategies to suppress virus infection in a host.

The innate immune response, particularly the interferon response, represents a first line of defence against viral infections. The interferon molecules produced from infected cells act through autocrine and paracrine signalling to turn host cells into an antiviral state. Although the molecular mechanisms of IFN signalling have been well characterized, how the interferon response collectively contribute to the regulation of host cells to stop or suppress viral infection during early infection remain unclear. Here, we use mathematical models to delineate the roles of the autocrine and the paracrine signalling, and show that their impacts on viral spread are dependent on how infection proceeds. In particular, we found that when infection is well-mixed, the paracrine signalling is not as effective; by contrast, when infection spreads in a spatial manner, a likely scenario during initial infection in tissue, the paracrine signalling can impede the spread of infection by decreasing the number of susceptible cells close to the site of infection. Furthermore, we argue that the interferon response can be seen as a parallel to population-level epidemic prevention strategies such as 'contact tracing' or 'ring vaccination'. Thus, our results here may have implications for the outbreak control at the population scale more broadly.

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

OBJECTIVE: Ovarian 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. METHODS: Qualitative 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. RESULTS: Nine 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." CONCLUSIONS: Our 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.

Anxiety may be a risk factor for experiencing gastrointestinal symptoms during endurance races: An observational study.

Scarce research has examined the links between stress, anxiety, and gastrointestinal (GI) symptoms during competition, despite that they are positively correlated in the general population. A total of 186 endurance athletes completed the Perceived Stress Scale (PSS)-14, Anxiety Sensitivity Index (ASI)-3, and State-Trait Inventory for Cognitive and Somatic Anxiety (STICSA) before races. Afterwards, they reported the severity of in-race GI symptoms. Associations between high levels of stress and anxiety (defined as the top tertile) and GI distress (≥3 on a 0-10 scale) were examined using logistic regression. Athletes with high PSS-14 scores did not have greater odds of GI symptoms, except nausea (odds ratio [OR] = 2.21, 95% confidence interval [CI] 1.02-4.78). High scores on the STICSA-trait were associated with nausea (OR = 3.43, 95% CI 1.57-7.50) and regurgitation/reflux (OR = 3.31, 95% CI 1.26-8.73). Among a sub-sample of 125 participants that completed STICSA-state questionnaires, higher anxiety was associated with nausea (OR = 5.57, 95% CI 1.96-15.83), regurgitation/reflux (OR = 3.75, 95% CI 1.17-12.00), fullness (OR = 2.98, 95% CI 1.05-8.49), and cramping (OR = 3.99, 95% CI 1.36-11.68). The ORs remained relatively stable after adjusting for age, gender, experience, body mass index, type of race, and race duration. ASI-3 scores were not associated with symptoms. Individuals with higher levels of anxiety, especially on the morning of a race, may be prone GI distress, particularly nausea, regurgitation/reflux, and cramping.

Injury-Related Fears During the Return-to-Sport Phase of ACL Reconstruction Rehabilitation.

BACKGROUND: Fear of reinjury is common after anterior cruciate ligament reconstruction (ACLR) and often deters a return to preinjury sport participation. A better understanding of injury-related fear is needed to inform rehabilitation strategies. PURPOSE/HYPOTHESIS: The purpose of this study was to (1) identify individual fear-evoking tasks or situations, (2) compare the intensity and amount of change relative to other injury-related fears (reinjury, knee giving way, and knee pain) after completion of a return-to-sport training program, and (3) determine whether standardized questionnaires can identify the intensity of fear for the individual fear-evoking task or situation and for fear of reinjury. The hypothesis was that the task or situation that evokes fear would vary across patients and the intensity of that fear would be higher and show less change after return-to-sport training compared with other injury-related fears. STUDY DESIGN: Case series; Level of evidence, 4. METHODS: Participants included 33 patients (15 males; mean age, 18 years) with ACLR who enrolled in a group-format return-to-sport training program. Questionnaires completed before and after return-to-sport training included items to specify fear-evoking tasks or situations, items to rate the intensity of various injury-related fears, the Anterior Cruciate Ligament Return to Sport after Injury scale (ACL-RSI), and the Tampa Scale for Kinesiophobia (TSK-11). RESULTS: The most common fear-evoking task or situation was cutting, followed by contact, jumping, and other. Intensity of fear-evoking task or situation was higher than other injury-related fears, but all fears decreased in intensity after training. The ACL-RSI score better identified the intensity of fear for the individual fear-evoking task or situation and for fear of reinjury than did the TSK-11 score. CONCLUSION: Activities that evoke fear vary across patients, but fear of cutting is common. The intensity of common fears after ACLR decreased after advanced group training, and large effect sizes were seen for nearly all examined fears. Fear of reinjury and intensity of individually feared tasks may be better reflected in the ACL-RSI score than the TSK-11 score.