Fear of Cancer Recurrence among Aboriginal and Torres Strait Islander Women Diagnosed with Breast Cancer.

Little is known about the fear of cancer recurrence (FCR) severity, coping strategies, or quality of life impacts for Indigenous populations. This mixed-methods study aimed to (1) quantify FCR levels among Indigenous Australian (i.e., Aboriginal and Torres Strait Islander) breast cancer survivors and (2) qualitatively explore experiences of FCR and the coping strategies used. Nineteen participants completed the Fear of Cancer Recurrence Inventory (FCRI); ten also completed a semi-structured interview. Interview transcripts were thematically analysed. Average FCR levels (Mean FCRI Total Score = 71.0, SD = 29.8) were higher than in previous studies of Australian breast cancer survivors, and 79% of participants reported sub-clinical or greater FCR (FCRI-Short Form ≥ 13/36). Qualitative themes revealed the pervasiveness of FCR, its impact on family, and exacerbation by experience/family history of comorbid health issues. Cultural identity, family, and a resilient mindset aided coping skills. Greater communication with healthcare providers about FCR and culturally safe and appropriate FCR care were desired. This study is the first to assess FCR among Aboriginal and Torres Strait Islander breast cancer survivors, extending the limited literature on FCR in Indigenous populations. Results suggest FCR is a significant issue in this population and will inform the development of culturally appropriate interventions to aid coping and improve quality of life.

What factors influence the treatment decisions of women with breast cancer? Does residential location play a role?

INTRODUCTION: Inequalities in cancer outcomes continue to exist throughout the world. In Australia, rural women diagnosed with breast cancer have significantly poorer 5-year survival, with variations in clinical management additionally observed. While factors impacting clinical management have been identified, there is little understanding about the factors that influence treatment decisions of women diagnosed with breast cancer. METHODS: A mixed-methods study was conducted with women diagnosed with either pre-invasive or invasive breast cancer in Australia. The study included qualitative interviews and an online survey utilising Breast Cancer Network Australia's membership. Semi-structured interviews were conducted with rural women focusing on topics such as decision-making and factors influencing this. The online survey amongst metropolitan and rural (including regional, remote, very remote) women examined involvement in, and preference for, decision-making, and to what degree certain factors influenced treatment decisions. Sociodemographics included age, residential location, education and household income. Qualitative interviews were analysed using NVivo, and descriptive analyses were used to examine differences in frequency distributions across survey questions by residential location and age group for the online survey. Multivariable logistic regression analysis was conducted to examine factors associated with treatment decision-making. RESULTS: Nine women participated in the qualitative interviews and 815 (365 metropolitan and 450 rural) completed the online survey. Interviews found most women concurred with the recommendations of their doctor(s) and did not see this experience as 'making a decision'. In the online survey, 83.2% of women indicated at least some involvement in the decision-making with this being similar between rural and metropolitan women. Compared to women educated at an under- or postgraduate level, those educated at high school or less were about 50% less likely to be involved in treatment decision(s) (OR=0.51, 95% confidence interval=0.30-0.86). In both interviews and the online survey, factors having the strongest influence on treatment decisions centred around survival and reducing risk of progression or recurrence. Significantly more rural compared to metropolitan women indicated their decision was strongly influenced by treatment service location (42.8% and 28.1%, respectively, p<0.001). Rural women more frequently cited financial costs of treatment influenced their decision compared to metropolitan women (30.4% and 21.3%, respectively, p=0.04). Significantly fewer rural, (16.2%) compared to metropolitan (23.6%) women, had breast reconstruction (p=0.009). The option of having reconstructive surgery was less frequently cited as influencing treatment decisions for rural compared to metropolitan women (27.7% v 44.1% respectively, p<0.001). CONCLUSIONS: The treatment decisions of the majority of women were strongly influenced by the need to do everything possible to get better; however, rural women additionally indicated their decisions were also influenced by factors such as access to treatment services and the financial costs of treatment. Addressing travel and costs issues for rural women with breast cancer should be prioritised. Additionally, the finding that women with lower levels of education were significantly less likely to be involved in the decision-making process highlights the need to develop new or tailor existing resources. Further work could also examine the reasons why rural women are less likely to consider breast reconstruction important in decision-making.

Development of a National Aboriginal and Torres Strait Islander Cancer Framework: A Shared Process to Guide Effective Policy and Practice.

Indigenous Australians experience a substantially higher cancer mortality rate than non-Indigenous Australians. While cancer outcomes are improving for non-Indigenous Australians, they are worsening for Indigenous Australians. Reducing this disparity requires evidence-based and culturally-appropriate guidance. The purpose of this paper is to describe an initiative by Cancer Australia and Menzies School of Health Research (Menzies) to develop Australia’s first National Aboriginal and Torres Strait Islander Cancer Framework using a process of co-design with relevant stakeholders. The initiative was guided by three core principles: achieving policy-relevant evidence-based outcomes; engaging and maintaining trust with Indigenous Australians at every phase; and employing best-practice and appropriate research methods. Four components of research comprised the Framework development: evidence review; multifaceted stakeholder consultation and input; triangulation of findings; and direct stakeholder input in drafting and refining the Framework. The evidence review confirmed the increasing burden of cancer on Indigenous Australians, while stakeholder consultations facilitated comprehensive input from those with lived experience. The consultations revealed issues not identified in existing literature, and gave different emphases of priority, thus reinforcing the value of including stakeholder perspectives. This paper focuses primarily on documenting the methods used; findings are presented only in order to illustrate the results of the process. The published Framework is available at www.canceraustralia.gov.au; further description and analyses of findings from the consultations will be published elsewhere. The logistics inherent in large-scale consultation are considerable. However, the quality of data and the foundation for sustained partnership with stakeholders and knowledge translation vastly outweighed the challenges. The process of wide-ranging stakeholder consultation described in this paper offers a model for other areas of national and international Indigenous priority setting and policy and practice development that meets the needs of those most affected. The Framework, through the establishment of an agreed, shared and evidence-based agenda, provides guidance for jurisdictional cancer plans, optimal care pathways, and program and service planning for the multiple players across all levels of the health system.

Web-Delivered Cognitive Behavioral Therapy for Distressed Cancer Patients: Randomized Controlled Trial.

BACKGROUND: Web-based interventions present a potentially cost-effective approach to supporting self-management for cancer patients; however, further evidence for acceptability and effectiveness is needed. OBJECTIVE: The goal of our research was to assess the effectiveness of an individualized Web-based cognitive behavioral therapy (CBT) intervention on improving psychological and quality of life outcomes in cancer patients with elevated psychological distress. METHODS: A total of 163 distressed cancer patients (111 female, 68.1%) were recruited through the Queensland Cancer Registry and the Cancer Council Queensland Cancer Helpline and randomly assigned to either a Web-based tailored CBT intervention (CancerCope) (79/163) or a static patient education website (84/163). At baseline and 8-week follow-up we assessed primary outcomes of psychological and cancer-specific distress and unmet psychological supportive care needs and secondary outcomes of positive adjustment and quality of life. RESULTS: Intention-to-treat analyses showed no evidence of a statistically significant intervention effect on primary or secondary outcomes. However, per-protocol analyses found a greater decrease for the CancerCope group in psychological distress (P=.04), cancer-specific distress (P=.02), and unmet psychological care needs (P=.03) from baseline to 8 weeks compared with the patient education group. Younger patients were more likely to complete the CancerCope intervention. CONCLUSIONS: This online CBT intervention was associated with greater decreases in distress for those patients who more closely adhered to the program. Given the low costs and high accessibility of this intervention approach, even if only effective for subgroups of patients, the potential impact may be substantial. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12613001026718; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=364768&isReview=true (Archived by WebCite at http://www.webcitation.org/6uPvpcovl).

Identifying research priorities to improve cancer control for Indigenous Australians.

OBJECTIVES: The cancer burden is high among Australia's Indigenous population. Following a period of increasing attention by researchers, policy makers and consumers, this study aimed to identify emerging research priorities in Indigenous cancer control. METHODS: A survey was administered to a network of individuals with an interest in cancer and Indigenous Australians. Respondents (N = 255) described what they thought was the most significant research priority for cancer control for Indigenous Australians and ranked prespecified research areas relating to components of the cancer continuum. RESULTS: Identified research priorities included cancer prevention and early detection; health literacy; and culturally appropriate care for Indigenous patients, survivors and families. Community engagement, Indigenous ownership, and partnership and collaboration were highlighted as critical elements underpinning research. CONCLUSIONS: The identified research priorities, along with seminal documents such as the National Aboriginal and Torres Strait Islander Cancer Framework, provide a roadmap for developing, funding, implementing and translating research to reduce the burden of cancer for Indigenous Australians.

A study protocol for a randomised controlled trial of an interactive web-based intervention: CancerCope.

INTRODUCTION: Approximately 35% of patients with cancer experience clinically significant distress, and unmet psychological supportive care needs are prevalent. This study describes the protocol for a randomised controlled trial (RCT) to assess the efficacy and cost-effectiveness of an internet-based psychological intervention for distressed patients with cancer. METHODS AND ANALYSIS: In phase I, the intervention was developed on an interactive web platform and pilot tested for acceptability using a qualitative methodology with 21 patients with cancer. Phase II is an RCT underway with patients with or at risk of elevated psychological distress comparing: (1) static patient education website with (2) individualised web-delivered cognitive behavioural intervention (CancerCope). Participants were recruited through the Queensland Cancer Registry and Cancer Council Helpline and met the following inclusion criteria: (1) recently diagnosed with cancer; (2) able to read and speak English; (3) no previous history of head injury, dementia or psychiatric illness; (4) no other concurrent cancer; (5) phone and internet access; (5) scored ≥4 on the Distress Thermometer. Participants are assessed at four time points: baseline/recruitment and 2, 6 and 12 months after recruitment and intervention commencement. Of the 163 participants recruited, 50% met caseness for distress. The area of highest unmet supportive care needs were psychological followed by physical and daily living needs. Primary outcomes are psychological and cancer-specific distress and unmet psychological supportive care needs. Secondary outcomes are positive adjustment, quality of life and cost-effectiveness. ETHICS AND DISSEMINATION: Ethical approval was obtained from the Griffith University Human Research Ethics Committee (Approval: PSY/70/13/HREC) and the Metro South Human Research Ethics Committee (HREC/13/QPAH/601). All participants provide informed consent prior to taking part in the study. Once completed, this study will provide recommendations about the efficacy of web-based cognitive behavioural interventions to facilitate better psychosocial adjustment for people with cancer. TRIAL REGISTRATION NUMBER: ANZCTR (ACTRN12613001026718).

Evaluation of the Families SHARE workbook: an educational tool outlining disease risk and healthy guidelines to reduce risk of heart disease, diabetes, breast cancer and colorectal cancer.

BACKGROUND: Common diseases such as heart disease, diabetes, and cancer are etiologically complex with multiple risk factors (e.g., environment, genetic, lifestyle). These risk factors tend to cluster in families, making families an important social context for intervention and lifestyle-focused disease prevention. The Families Sharing Health Assessment and Risk Evaluation (SHARE) workbook was designed as an educational tool outlining family health history based risk of heart disease, type 2 diabetes, breast cancer, and colorectal cancer. The current paper describes the steps taken to develop and evaluate the workbook employing a user-centered design approach. METHODS: The workbook was developed in four steps, culminating in an evaluation focusing on understanding and usability of the tool. The evaluation was based on two Phases of data collected from a sample of mothers of young children in the Washington, D.C., area. A baseline assessment and follow-up approximately two weeks after receipt of the workbook were conducted, as well as focus groups with participants. The design of the workbook was refined in response to participant feedback from the first evaluation Phase and subsequently re-evaluated with a new sample. RESULTS: After incorporating user-based feedback and revising the workbook, Phase 2 evaluation results indicated that understanding of the workbook components improved for all sections (from 6.26 to 6.81 on a 7-point scale). In addition, 100% of users were able to use the algorithm to assess their disease risk and over 60% used the algorithm to assess family members' disease risk. At follow-up, confidence to increase fruit, vegetable and fiber intake improved significantly, as well. CONCLUSIONS: The Families SHARE workbook was developed and evaluated resulting in a family health history tool that is both understandable and usable by key stakeholders. This educational tool will be used in intervention studies assessing the effectiveness of family genomics health educators who use the Families SHARE workbook to disseminate family risk information and encourage risk reducing behaviors. TRIAL REGISTRATION: ClinicalTrials.gov, NCT01498276 . Registered 21 December 2011.

Sleep disturbance in cancer patients and caregivers who contact telephone-based help services.

PURPOSE: Insomnia is highly prevalent in people who are affected by cancer. However, options available to receive support for insomnia are limited. Telephone-based help services, such as cancer helplines, may be ideally placed to meet unmet needs regarding insomnia after cancer. The present study describes the prevalence and predictors of insomnia in patients and caregivers who call cancer helplines seeking support. METHODS: Participants (N = 500 patients, N = 234 caregivers) were recruited through an Australian state-based telephone-delivered cancer helpline. In addition to routine screening with the Distress Thermometer, participants were administered the Insomnia Severity Index. RESULTS: Most participants were female, older than 50 years of age, and were three (caregivers) to four (patients) months post-diagnosis. Insomnia symptoms were reported by 59.4 % of patients and 62.9 % of caregivers, with moderate to severe levels of insomnia reported by 27 % of patients and 30 % of caregivers. Insomnia was predicted by distress level for both patients (ß = .31, p < .001) and caregivers (ß = .32, p < .001) and age for patients only (ß = -.13, p < .01). CONCLUSIONS: Insomnia symptoms are common in patients and caregivers who call cancer helplines and appear to be related to distress. Telephone-based helplines have the potential to act as the first line of support in a stepped care approach addressing insomnia.

Adopting a survivor identity after cancer in a peer support context.

PURPOSE: The term cancer survivor can refer to individuals from diagnosis through the rest of their life. However, not all people with cancer identify as a survivor, and underlying factors and correlates are yet to be well-explored empirically. METHODS: Study 1 surveyed men in a prostate cancer peer support network (n = 514), exploring psychosocial variables related to adopting a survivor identity. Study 2 interviewed 160 women with breast cancer in an online support group and collected observational data, assessing how survivor identity relates to perceptions of and participation in online support groups. RESULTS: For men, survivor identity (35 %) was related to lower levels of threat appraisal (p = .000), more deliberate rumination (p = .042), gaining greater understanding of cancer experience through peers (p = .041) and a higher, though marginally significant, level of posttraumatic growth (p = .052). Women adopting a survivor identity (50 %) had higher rates of online support group posts (p = .048), a greater feeling of mattering to the group (p = .002), rated the group as more helpful (p = .004 to .01) and had less difficulty in relating to the group (p = .002) than women not identifying as a survivor. CONCLUSIONS: Survivor identity was related to active and positive engagement with peers, and cognitive processing. IMPLICATIONS FOR CANCER SURVIVORS: While the cancer survivor metaphor may be salient for some people diagnosed with cancer, many did not associate with the term, highlighting the complexity surrounding survivorship discourse and the need to be sensitive to unique individual needs in psychosocial interventions that involve groups.

A structural equation model of posttraumatic growth after prostate cancer.

BACKGROUND: Posttraumatic growth (PTG) encompasses an individual's perception of positive personal changes as a consequence of a traumatic incident. The current study tested a theoretical model of PTG with the inclusion of resilience in the context of cancer survivors. METHODS: Members of a prostate cancer support network were invited to complete a cross-sectional mail survey (N = 514, 52.8% response; mean age 70.17 years, and time since diagnosis 7.5 years). RESULTS: Challenge appraisal (ß = 0.361), examining core beliefs (ß = 0.474), intrusive rumination (ß = 0.130), and peer support factors (ß = 0.104) had significant direct effects on PTG. Resilience (ß = 0.164), challenge appraisal (ß = 0.215), distress (ß = 0.186), and examining core beliefs (ß = 0.105) had significant indirect effects on PTG. CONCLUSIONS: Results support the notion that the appraisal of cancer, disruption of fundamental beliefs, and experience of intrusive cancer-related rumination are associated with PTG. Additionally, a sense of connection with peers and seeking an understanding of the cancer experience through peers is important for the perception of PTG. Possible indirect pathways were also proposed between resilience and PTG.

Newfound compassion after prostate cancer: a psychometric evaluation of additional items in the Posttraumatic Growth Inventory.

PURPOSE: The most widely used measure of posttraumatic growth (PTG) is the Posttraumatic Growth Inventory (PTGI). Qualitative research indicates the importance of increased compassion as a result of struggling with challenges presented by cancer and treatments. However, current PTG measures may not adequately assess compassion. METHODS: A cross-sectional survey of 514 prostate cancer survivors assessed the PTGI and Dispositional Positive Emotional Scale (DPES). Five additional PTG items were derived from previous qualitative research to assess increased compassion. RESULTS: After removing eight items with complex loadings, a principal components analysis with oblimin rotation revealed a six-component structure. A clear delineation was seen between components relating to compassion, new possibilities, relating to others, personal strength, appreciation of life and spiritual change. Compassion accounted for 48.9 % of variance in data, with the overall model accounting for 79.9 % of variance. Strong factorability was demonstrated through Kaiser-Meyer-Olkin (0.92) and Bartlett's test of sphericity (approximate χ (2) = 5,791.85, df 153, p < 0.001). The six-component structure was validated with a confirmatory factor analysis. Strong internal consistency was evidenced through Cronbach's alpha coefficients ranging from 0.74 to 0.90 for subscales, and item-to-total correlations and inter-item correlations exceeded accepted thresholds of 0.50 and 0.30, respectively. Convergent validity was acceptable between the PTGI compassion subscale and DPES (r = 0.50). CONCLUSIONS: Compassion is a highly salient PTG domain after prostate cancer. Further studies can explore this construct with more heterogeneous samples of cancer types and gender.

The role of religious and existential well-being in families with Lynch syndrome: prevention, family communication, and psychosocial adjustment.

This study explored the role of religious (RWB) and existential well-being (EWB) on psychosocial factors, support network characteristics, and screening practices in families with Lynch syndrome, also referred to as hereditary nonpolyposis colon cancer (HNPCC). Participants were individuals with Lynch syndrome associated cancers and their first-degree relatives at risk of inheriting an identified deleterious mutation. Analyses considered both family RWB and EWB norms and individual deviations from that norm. Analyses controlled for age, gender, cancer diagnosis, number of respondents, and network size. Higher family RWB was associated with increased depressive symptoms (p < .05) and avoidant cognitions (p < .05). Higher family EWB was related to decreased depression symptoms (p < .001). Higher family EWB was associated with fecal occult blood testing (p < .01), and family communication about genetic counselling and testing (p < .01). Analyses pointed to individual effects of EWB above and beyond family-level effects. Individuals with lower EWB than their family had lower perceived risk for colorectal cancer (p < .05), communicated disease risk information to less family members (p < .05), and were less likely to undergo recent colonoscopies (p < .05). Participants with lower EWB than their family also had higher cancer worry (p < .01) and increased depressive symptoms (p < .001). Findings indicate the importance of assessing individuals within the context of their family network and being aware of family characteristics which may impact individual adjustment to disease risk. Interventions considering family-level factors may provide efficient pathways to improving psychosocial factors, screening practices, communication about disease risk and genetic testing, and cancer prevention.

Posttraumatic growth after cancer: the importance of health-related benefits and newfound compassion for others.

PURPOSE: There is growing evidence in psycho-oncology that people can experience posttraumatic growth (PTG), or positive life change, in addition to the distress that may occur after a cancer diagnosis. Many studies utilise existing PTG measures that were designed for general trauma experiences, such as the Posttraumatic Growth Inventory. However, such inventories may not take into account life changes associated with a crisis specifically in a health-related context. METHOD: The current study presents a mixed method exploration of the post-diagnosis experience of cancer survivors (N = 209) approximately 3 years after diagnosis. RESULTS: Quantitative and qualitative assessment of PTG showed that appreciating life was the most salient area of positive life change for cancer survivors. The results also revealed that in addition to several PTG domains captured by existing quantitative PTG measures, further positive life changes were reported, including compassion for others and health-related life changes. CONCLUSIONS: These domains of PTG highlight the unique context of a cancer diagnosis and the potential underestimation of positive life change by existing inventories. Further research is warranted that is directed towards designing a context-specific PTG measure for cancer survivors.

Survivor identity and post-traumatic growth after participating in challenge-based peer-support programmes.

OBJECTIVES: The social construction of breast cancer (BC) survivor identity has produced a powerful image of woman as survivor. Group membership through peer-support programmes can provide positive role models, shape survivor identity and promote post-traumatic growth (PTG). The main objective of this study was to conduct a qualitative investigation based on a phenomenological framework in order to understand the lived experience of BC survivors participating in a peer-support programme based on a challenge event. DESIGN: This is a qualitative semi-structured and written narrative study. Interviews were subjected to interpretative phenomenological analysis and the written narratives via thematic analysis. METHOD: Interviews were conducted with 27 participants who were new to the peer-support event for women diagnosed with BC, and 10 participants who had taken part in multiple events provided written narratives of their experience. Interviews and surveys were completed pre- and post-event. RESULTS: Important elements of the peer-support environment included a safe network of other survivors, which provided understanding and acceptance. Overcoming challenges during the event and the opportunity to bond with positive role models affirmed a strong survivor identity and promoted PTG. For some participants, a shift in identity was evident with a newfound positive identification with the term BC survivor. CONCLUSIONS: Peer-support programmes based on challenge events have the potential to extend the type of supportive care that is available for women diagnosed with BC by providing an alternative to the traditional support group format.

A community-based approach to cancer counselling for patients and carers: a preliminary study.

OBJECTIVE: The delivery of psychological care services to people with cancer and their carers is a key clinical priority that has yet to be broadly implemented. The present study aimed to provide guidance for service provision by describing a community-based intervention approach; outlining the characteristics, psychological concerns, and distress outcomes for people who utilise the service. METHODS: Over a 3-year period 681 patients and 520 significant others referred from a community-based Cancer Helpline received tele-based psychosocial interventions. RESULTS: In this case series presenting problems varied between patients and significant others, with significant others reporting higher levels of distress (p<0.001). Both patients and significant others experienced decreases in distress over the period of the intervention (p<0.001). CONCLUSIONS: This study provides level IV evidence that the tele-based intervention for cancer-related distress is an effective approach to service delivery. A randomised control trial is currently underway to assess the effectiveness of this approach.

Rumination, post-traumatic growth, and distress: structural equation modelling with cancer survivors.

OBJECTIVE: Theoretical models of post-traumatic growth (PTG) have been derived in the general trauma literature to describe the post-trauma experience that facilitates the perception of positive life changes. To develop a statistical model identifying factors that are associated with PTG, structural equation modelling (SEM) was used in the current study to assess the relationships between perception of diagnosis severity, rumination, social support, distress, and PTG. METHOD: A statistical model of PTG was tested in a sample of participants diagnosed with a variety of cancers (N=313). RESULTS: An initial principal components analysis of the measure used to assess rumination revealed three components: intrusive rumination, deliberate rumination of benefits, and life purpose rumination. SEM results indicated that the model fit the data well and that 30% of the variance in PTG was explained by the variables. Trauma severity was directly related to distress, but not to PTG. Deliberately ruminating on benefits and social support were directly related to PTG. Life purpose rumination and intrusive rumination were associated with distress. CONCLUSIONS: The model showed that in addition to having unique correlating factors, distress was not related to PTG, thereby providing support for the notion that these are discrete constructs in the post-diagnosis experience. The statistical model provides support that post-diagnosis experience is simultaneously shaped by positive and negative life changes and that one or the other outcome may be prevalent or may occur concurrently. As such, an implication for practice is the need for supportive care that is holistic in nature.

Multidimensional nature of posttraumatic growth in an Australian population.

Recent trauma literature has supported a philosophical shift from a pathogenic to a salutogenic paradigm in which the focus is on positive, as well as negative, posttrauma changes; however, empirical knowledge exploring the different domains of positive change or posttraumatic growth (PTG) is scarce. The present study investigated the multidimensionality of PTG in Australian undergraduate students (N = 219). Results indicated five factors for the Posttraumatic Growth Inventory, and moderate levels of PTG. Trauma severity was found to significantly predict PTG in addition to a positive correlation between PTG and negative posttrauma effects. While not negating negative effects of traumatic experiences, this area of traumatology research has important implications for redefining the "victims" of trauma as individuals capable of positive change rather than merely surviving.