The value of real-world testing: a qualitative feasibility study to explore staff and organisational barriers and strategies to support implementation of a clinical pathway for the management of anxiety and depression in adult cancer patients.

BACKGROUND: Effective translation of evidence-based research into clinical practice requires assessment of the many factors that can impact implementation success. Research methods that draw on recognised implementation frameworks, such as the Promoting Action Research in Health Services (PARiHS) framework, and that test feasibility to gain information prior to full-scale roll-out, can support a more structured approach to implementation. OBJECTIVE: This paper presents qualitative findings from a feasibility study in one cancer service of an online portal to operationalise a clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients. The aim of this study was to explore staff perspectives on the feasibility and acceptance of a range of strategies to support implementation in order to inform the full-scale roll-out. METHODS: Semi-structured interviews were conducted with fifteen hospital staff holding a range of clinical, administrative and managerial roles, and with differing levels of exposure to the pathway. Qualitative data were analysed thematically, and themes were subsequently organised within the constructs of the PARiHS framework. RESULTS: Barriers and facilitators that affected the feasibility of the online portal and implementation strategies were organised across eight key themes: staff perceptions, culture, external influences, attitudes to psychosocial care, intervention fit, familiarity, burden and engagement. These themes mapped to the PARiHS framework's three domains of evidence, context and facilitation. CONCLUSIONS: Implementation success may be threatened by a range of factors related to the real-world context, perceptions of the intervention (evidence) and the process by which it is introduced (facilitation). Feasibility testing of implementation strategies can provide unique insights into issues likely to influence full-scale implementation, allowing for early tailoring and more effective facilitation which may save time, money and effort in the long-term. Use of a determinant implementation framework can assist researchers to synthesise and effectively respond to barriers as they arise. While the current feasibility study related to a specific implementation, strategies such as regular engagement with local stakeholders, and discussion of barriers arising in real-time during early testing is likely to be of benefit to all researchers and clinicians seeking to maximise the likelihood of long-term implementation success.

Predictors of long-term cancer-related distress among female BRCA1 and BRCA2 mutation carriers without a cancer diagnosis: an international analysis.

BACKGROUND: Women with a BRCA1 or BRCA2 mutation have high lifetime risks of developing breast and ovarian cancers. We sought to estimate the prevalence of cancer-related distress and to identify predictors of distress in an international sample of unaffected women with a BRCA mutation. METHODS: Women with a BRCA1/2 mutation and no previous cancer diagnosis were recruited from the United States, Canada, the United Kingdom, Australia and from a national advocacy group. Using an online survey, we asked about cancer risk reduction options and screening, and we measured cancer-related distress using the Impact of Event Scale. RESULTS: Among 576 respondents, mean age was 40.8 years (SD = 8.1). On average 4.9 years after a positive test result, 16.3% of women reported moderate-to-severe cancer-related distress. Women who had undergone risk-reducing breast and ovarian surgery were less likely to have (moderate or severe) cancer-related distress compared to other women (22.0% versus 11.4%, P value = 0.007). Women recruited from the advocacy group were more likely to have cancer-related distress than other women (21.6% versus 5.3%, P value = 0.002). CONCLUSIONS: Approximately 16% of women with a BRCA1 or BRCA2 mutation experience distress levels comparable to those of women after a cancer diagnosis. Distress was lower for women who had risk-reducing surgery.

Clinical anxiety disorders in the context of cancer: A scoping review of impact on resource use and healthcare costs.

Prevalence of clinical anxiety among patients with cancer is higher than the general population. Clinical anxiety in people with other medical conditions is associated with greater healthcare resource use and costs. This scoping review describes the evidence relating to costs associated with clinical anxiety in cancer populations. We conducted searches of online databases Medline, Embase, Cinahl, National Health Service Economic Evaluation Database (NHS-EED) and Cochrane Library of systematic reviews to identify studies published between 2006 and 2017 that included healthcare cost in terms of monetary or health service utilisation variables. Of 411 records screened, six studies met inclusion criteria. Only one study used formal diagnostic criteria to identify clinical anxiety. The healthcare system perspective was most common, with direct costs such as medications, hospital visits, type of therapy and use of mental health services reported. All studies found anxiety was related to increased costs/resource use; however, methodological differences mean specific costs and potential impact of interventions on resource use remain relatively unquantified. Despite the prevalence of clinical anxiety, there is little data on the economic impact on health service costs and utilisation. Future studies quantifying the true cost are urgently needed to inform healthcare service planning and delivery, and quality improvement initiatives.

Are psychological interventions effective on anxiety in cancer patients? A systematic review and meta-analyses.

OBJECTIVE: The aims of this meta-analysis were to estimate the overall effect size (ES) of psychological interventions on anxiety in patients with cancer and extract sample and intervention characteristics that influence effectiveness. METHODS: PubMed, Scopus, PsycINFO, Embase, Medline, and CINAHL were searched using Medical Subject Heading keywords 'cancer' AND 'anxiety' AND 'psychological intervention' AND 'counselling' AND 'psycho*' AND 'psychotherapy' AND 'psychosocial' AND 'therapy' between January 1993 and June 2017. RESULTS: Seventy-one studies were eligible for the systematic review; among them, 51 studies were included in the meta-analysis calculations. The overall ES was -0.21 (95% confidence interval; -0.30 to -0.13) in favour of the intervention. From subgroup analyses, studies conducted in Asia, enrolling inpatients, focussing on relaxation, of <6-week intervention duration, <30-minute intervention dose per session, and <4 hours of total time of intervention showed moderate ESs ranging from -0.40 to -0.55. Only 2 studies restricted enrolment to prescreened patients with clinically elevated level of anxiety and showed moderate ES of -0.58. CONCLUSIONS: Low psychological distress at baseline and nonevidence-based interventions were the main factors identified for low effectiveness. Screening and assessment to determine clinical levels of anxiety in patients with cancer should be considered in future trials as an inclusion criterion before providing psychological interventions. Systematic review registration: PROSPERO: International Prospective Register of Systematic Reviews: CRD42017056132.

Being mindful of mindfulness interventions in cancer: A systematic review of intervention reporting and study methodology.

OBJECTIVES: While mindfulness-based stress reduction (MBSR) and mindfulness-based cognitive therapy (MBCT) have demonstrated efficacy in clinical populations, the potential therapeutic benefit of mindfulness in the context of cancer is less clear. The aim of this review was to critically appraise mindfulness intervention reporting and study methodology. METHODS: Studies using randomized control trial design and/or a control arm were included. PubMed, Medline, PsycINFO, CINAHL, and Embase databases between January 1999 and April 2017 were searched. Studies were assessed on (1) reported theoretical framework, (2) intervention description, and (3) justification of modifications to standardized MBSR/MBCT. The overall quality of study design and research methodology were also assessed. RESULTS: Of 30 studies identified, none adhered to MBSR. Modified versions of MBSR were reported in 19 studies. Five studies reported variants of MBCT, 1 used a combination of MBSR/MBCT, and 5 inadequately documented the intervention/ theoretical framework. Overall, component and timeline modifications were poorly documented and justified. Mean intervention contact time was less than standardized MBSR/MBCT protocols. Target outcomes were poorly justified, and 12 studies failed to identify a primary aim, reporting multiple outcomes. Only 9 of 15 studies recruiting clinical populations included clinical cutoffs, and an active therapeutic control was included in 4 studies. CONCLUSIONS: Mindfulness is increasingly considered a standard therapy in psycho-oncology. While many studies proclaim benefits, considerable variability, modification to standardized protocols, and claims of benefit often reflect decreases in sub-clinical supportive care symptomology rather than therapeutic relief of clinically significant psychological disorders.

What type and dose of antidepressants are cancer and non-cancer inpatients being prescribed: a retrospective case-control study at an Australian tertiary hospital.

PURPOSE: Cancer patients are often prescribed antidepressants, but little data is available about whether the type and dose are similar to prescriptions to patients with other chronic diseases. This study compared the prescription practices of antidepressants to cancer and non-cancer inpatients at a major Australian tertiary hospital and assessed side effects and potential drug-drug interactions. METHODS: Inpatients diagnosed with cancer within the past 12 months and prescribed antidepressants were age and gender matched to inpatients with other chronic disease conditions. Data from 75 cancer and 75 non-cancer inpatients were extracted. RESULTS: Antidepressants were prescribed to cancer and non-cancer patients, respectively, for the treatment of depression (n = 50 vs n = 59), other mental health problems (n = 8 vs n = 11, p < 0.67) or unspecified reasons (n = 17 vs n = 5, p < 0.02). Mirtazapine (n = 11/75) was most commonly prescribed to cancer patients followed by duloxetine (n = 9/75). Desvenlafaxine (n = 15/75) was prescribed most commonly to non-cancer inpatients, followed by mirtazapine (n = 11/75). Four cancer patients and three non-cancer patients had documented adverse side effects from antidepressants. About one-third of cancer patients (n = 23/75) and about a quarter of non-cancer patients (n = 18/75) were prescribed other medicines with the potential for drug-drug interactions with antidepressants. CONCLUSIONS: Antidepressants were prescribed for a range of indications in all patients, but more commonly for unspecified reasons among the cancer patients. Future prospective studies that monitor antidepressant prescribing to cancer patients should ascertain details of the indication, pathways to prescription and differences in type, dose or schedule depending on prescribing medical practitioner.

Preferences for breast cancer risk reduction among BRCA1/BRCA2 mutation carriers: a discrete-choice experiment.

PURPOSE: Unaffected women who carry BRCA1 or BRCA2 mutations face difficult choices about reducing their breast cancer risk. Understanding their treatment preferences could help us improve patient counseling and inform drug trials. The objective was to explore preferences for various risk-reducing options among women with germline BRCA1/2 mutations using a discrete-choice experiment survey and to compare expressed preferences with actual behaviors. METHODS: A discrete-choice experiment survey was designed wherein women choose between hypothetical treatments to reduce breast cancer risk. The hypothetical treatments were characterized by the extent of breast cancer risk reduction, treatment duration, impact on fertility, hormone levels, risk of uterine cancer, and ease and mode of administration. Data were analyzed using a random-parameters logit model. Women were also asked to express their preference between surgical and chemoprevention options and to report on their actual risk-reduction actions. Women aged 25-55 years with germline BRCA1/2 mutations who were unaffected with breast or ovarian cancer were recruited through research registries at five clinics and a patient advocacy group. RESULTS: Between January 2015 and March 2016, 622 women completed the survey. Breast cancer risk reduction was the most important consideration expressed, followed by maintaining fertility. Among the subset of women who wished to have children in future, the ability to maintain fertility was the most important factor, followed by the extent of risk reduction. Many more women said they would take a chemoprevention drug than had actually taken chemoprevention. CONCLUSIONS: Women with BRCA1/2 mutations indicated strong preferences for breast cancer risk reduction and maintaining fertility. The expressed desire to have a safe chemoprevention drug available to them was not met by current chemoprevention options.

Evaluation of a Web-Based Cognitive Rehabilitation Program in Cancer Survivors Reporting Cognitive Symptoms After Chemotherapy.

Purpose Cognitive impairment is reported frequently by cancer survivors. There are no proven treatments. We evaluated a cognitive rehabilitation program (Insight) and compared it with standard care in cancer survivors self-reporting cognitive symptoms. Patients and Methods We recruited adult cancer survivors with a primary malignancy (excluding central nervous system malignancies) who had completed three or more cycles of adjuvant chemotherapy in the previous 6 to 60 months and reported persistent cognitive symptoms. All participants received a 30-minute telephone consultation and were then randomly assigned to the 15-week, home-based intervention or to standard care. Primary outcome was self-reported cognitive function (Functional Assessment of Cancer Therapy Cognitive Function [FACT-COG] perceived cognitive impairment [PCI] subscale): difference between groups after intervention (T2) and 6 months later (T3). Results A total of 242 participants were randomly assigned: median age, 53 years; 95% female. The primary outcome of difference in FACT-COG PCI was significant, with less PCI in the intervention group at T2 ( P < .001). This difference was sustained at T3 ( P < .001). At T2, there was a significant difference in all FACT-COG subscales, favoring the intervention. Neuropsychological results were not significantly different between the groups at T2 or T3. There were significantly lower levels of anxiety/depression and fatigue in the intervention group at T2. There were significant improvements in stress in the intervention group at both time points. There was no significant difference in quality of life between the groups at T2, but the intervention group had better quality of life at T3. Conclusion The intervention, Insight, led to improvements in cognitive symptoms compared with standard care. To our knowledge, this is the first large randomized controlled trial showing an improvement in self-reported cognitive function in cancer survivors, indicating that this intervention is a feasible treatment.

Ovarian cancer study dropouts had worse health-related quality of life and psychosocial symptoms at baseline and over time.

AIMS: Participant drop out is a major barrier to high-quality patient-reported outcome (PRO) data analysis in cancer research as patients with worsening health are more likely to dropout. To test the hypothesis that ovarian cancer patients with worse PROs would drop out earlier, we examined how patients differed by time of dropout on health-related quality of life (HRQOL), anxiety, depression, optimism and insomnia. METHODS: This analysis included 619 participants, stratified by time of dropout, from the Australian Ovarian Cancer Study - Quality of Life substudy, in which participants completed PRO questionnaires at three-monthly intervals for 21 months. Trends in PROs over time were examined. Pearson correlations examined the relationship between time of dropout and baseline PROs. Multiple linear regression models including age, disease stage and time since diagnosis examined relationships between baseline and final PRO scores, and final PRO scores and dropout group. RESULTS: Participants who dropped out earlier had significantly worse baseline HRQOL (p < 0.0001) and higher depression (p < 0.0001). For all five PROs, final scores were significantly associated with baseline scores (p < 0.0001). Time of dropout was significantly associated with final HRQOL (p = 0.003), anxiety (p = 0.05), depression (p = 0.02) and optimism (p = 0.02) scores. Depression, HRQOL and anxiety worsened at a faster rate overtime in dropouts than study completers. CONCLUSIONS: Poorer HRQOL and higher depression at baseline, and final HRQOL, anxiety, depression and optimism scores were predictive of time of dropout. These results highlight the importance of collecting auxiliary data to inform careful and considered handling of missing PRO data during analysis, interpretation and reporting.

Helplessness/hopelessness, minimization and optimism predict survival in women with invasive ovarian cancer: a role for targeted support during initial treatment decision-making?

PURPOSE: Women with advanced ovarian cancer generally have a poor prognosis but there is significant variability in survival despite similar disease characteristics and treatment regimens. The aim of this study was to determine whether psychosocial factors predict survival in women with ovarian cancer, controlling for potential confounders. METHODS: The sample comprised 798 women with invasive ovarian cancer recruited into the Australian Ovarian Cancer Study and a subsequent quality of life study. Validated measures of depression, optimism, minimization, helplessness/hopelessness, and social support were completed 3-6 monthly for up to 2 years. Four hundred nineteen women (52.5 %) died over the follow-up period. Associations between time-varying psychosocial variables and survival were tested using adjusted Cox proportional hazard models. RESULTS: There was a significant interaction of psychosocial variables measured prior to first progression and overall survival, with higher optimism (adjusted hazard ratio per 1 standard deviation (HR) = 0.80, 95 % confidence interval (CI) 0.65-0.97), higher minimization (HR = 0.79, CI 0.66-0.94), and lower helplessness/hopelessness (HR = 1.40, CI 1.15-1.71) associated with longer survival. After disease progression, these variables were not associated with survival (optimism HR = 1.10, CI 0.95-1.27; minimization HR = 1.12, CI 0.95-1.31; and helplessness/hopelessness HR = 0.86, CI 0.74-1.00). Depression and social support were not associated with survival. CONCLUSIONS: In women with invasive ovarian cancer, psychosocial variables prior to disease progression appear to impact on overall survival, suggesting a preventive rather than modifying role. Addressing psychosocial responses to cancer and their potential impact on treatment decision-making early in the disease trajectory may benefit survival and quality of life.

Developing a clinical pathway for the identification and management of anxiety and depression in adult cancer patients: an online Delphi consensus process.

PURPOSE: People with cancer and their families experience high levels of psychological morbidity. However, many cancer services do not routinely screen patients for anxiety and depression, and there are no standardized clinical referral pathways. This study aimed to establish consensus on elements of a draft clinical pathway tailored to the Australian context. METHODS: A two-round Delphi study was conducted to gain consensus among Australian oncology and psycho-oncology clinicians about the validity of 39 items that form the basis of a clinical pathway that includes screening, assessment, referral and stepped care management of anxiety and depression in the context of cancer. The expert panel comprised 87 multidisciplinary clinician members of the Australian Psycho-oncology Co-operative Research Group (PoCoG). Respondents rated their level of agreement with each statement on a 5-point Likert scale. Consensus was defined as >80% of respondents scoring within 2 points on the Likert scale. RESULTS: Consensus was reached for 21 of 39 items, and a further 15 items approached consensus except for specific contextual factors, after two Delphi rounds. Formal screening for anxiety and depression, a stepped care model of management and recommendations for inclusion of length of treatment and time to review were endorsed. Consensus was not reached on items related to roles and responsibilities, particularly those not applicable across cancer settings. CONCLUSIONS: This study identified a core set of evidence- and consensus-based principles considered essential to a stepped care model of care incorporating identification, referral and management of anxiety and depression in adult cancer patients.

Clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients: Australian guidelines.

PURPOSE: A clinical pathway for anxiety and depression in adult cancer patients was developed to guide best practice in Australia. METHODS: The pathway was based on a rapid review of existing guidelines, systematic reviews and meta-analyses, stakeholder interviews, a Delphi process with 87 multidisciplinary stakeholders and input from a multidisciplinary advisory panel. RESULTS: The pathway recommends formalized routine screening for anxiety and depression in patients with cancer at key points in the patient's journey. The Edmonton Symptom Assessment System or distress thermometer with problem checklist is recommended as brief screening tools, combined with a more detailed tool, such as the Hospital Anxiety and Depression Scale, to identify possible cases. A structured clinical interview will be required to confirm diagnosis. When anxiety or depression is identified, it is recommended that one person in a treating team takes responsibility for coordinating appropriate assessment, referral and follow-up (not necessarily carrying these out themselves). A stepped care model of intervention is proposed, beginning with the least intensive available that is still likely to provide significant health gain. The exact intervention, treatment length and follow-up timelines, as well as professionals involved, are provided as a guide only. Each service should identify their own referral network based on local resources and current service structure, as well as patient preference. DISCUSSION: This clinical pathway will assist cancer services to design their own systems to detect and manage anxiety and depression in their patients, to improve the quality of care.

Treatment of holistic suffering in cancer: A systematic literature review.

BACKGROUND: Holistic suffering is a debilitating problem for cancer patients. Although many treatments have been suggested for its alleviation, they have not been compared for effectiveness. AIM: This literature review seeks to identify what interventions are effective in treatment of holistic suffering of cancer patients. DESIGN: A systematic review was conducted to identify and evaluate studies of interventions for holistic suffering in adult cancer patients. Search terms were generated iteratively from the literature. DATA SOURCES: MEDLINE, EMBASE, the Cochrane Library and PsycINFO databases were searched for the years 1992-2015. Included studies were peer-reviewed, English language reports of either a controlled trial or a randomised controlled trial focusing on therapies aimed at relieving suffering in adult cancer patients. Articles were excluded if focused predominantly on spiritual or existential issues or concerns not leading to suffering. Studies were graded for quality using the QualSyst quantitative checklist. Levels of evidence were ascertained by completing the National Health and Medical Research Council criteria. Results are reported according to AMSTAR guidelines. RESULTS: The studies represented seven intervention types. Meaning-centred, hope-centred and stress-reduction interventions were found to be effective. Results of both psycho-educational and spiritual interventions in improving spiritual well-being were mixed. Supportive-expressive interventions - with the exception of forgiveness therapy - were not efficacious. There was little or no evidence for the efficacy of creative and healing arts and other assessed interventions such as animal therapy and haptotherapy. CONCLUSION: This systematic review found that spiritual well-being, meaning, hope and benefit finding can be positively impacted by a variety of treatment modalities.

Intuition versus cognition: a qualitative exploration of how women understand and manage their increased breast cancer risk.

Risk comprehension in individuals at increased familial risk of cancer is suboptimal and little is known about how risk is understood and managed by at-risk individuals who do not undergo genetic testing. We qualitatively studied these issues in 36 unaffected women from high-risk breast cancer families, including both women who had and had not undergone genetic testing. Data were collected through semi-structured interviews and data analysis was guided by Grounded Theory. Risk comprehension and risk management were largely influenced by the individual's experience of coming from a high-risk family, with both tested and untested women relying heavily on their intuition. Although women's cognitive understanding of their risk appeared generally accurate, this objective risk information was considered of secondary value. The findings could be used to guide the development and delivery of information about risk and risk management to genetically tested and untested individuals at increased risk of hereditary cancer.

Facilitators and Challenges in Psychosocial Adaptation to Being at Increased Familial Risk of Breast Cancer.

Little is known about the process of psychosocial adaptation to familial risk in tested and untested individuals at increased familial risk of cancer. This paper presents findings from a qualitative study of 36 women participating in the Kathleen Cuningham Consortium for Research into Familial Breast cancer (kConFab) Psychosocial study. Facilitators and challenges in psychosocial adaptation were identified through semi-structured interviews. The women, who were either tested (carriers or non-carriers of breast cancer susceptibility mutations) or untested (ineligible for testing or eligible but delayed or declined testing), described personal, support network and healthcare characteristics that impacted on the adaptation process. Challenges in one domain could be overcome by facilitators in other domains and key differences relating to whether women had undergone testing, or not, were identified. Tested and untested women with an increased familial risk of breast cancer may benefit from support tailored to their mutation testing status in order to enhance adaptation.

Everybody wants it done but nobody wants to do it: an exploration of the barrier and enablers of critical components towards creating a clinical pathway for anxiety and depression in cancer.

BACKGROUND: This study aimed to explore barriers to and enablers for future implementation of a draft clinical pathway for anxiety and depression in cancer patients in the Australian context. METHODS: Health professionals reviewed a draft clinical pathway and participated in qualitative interviews about the delivery of psychosocial care in their setting, individual components of the draft pathway, and barriers and enablers for its future implementation. RESULTS: Five interrelated themes were identified: ownership; resources and responsibility; education and training; patient reluctance; and integration with health services beyond oncology. CONCLUSIONS: The five themes were perceived as both barriers and enablers and provide a basis for an implementation plan that includes strategies to overcome barriers. The next steps are to design and deliver the clinical pathway with specific implementation strategies that address team ownership, endorsement by leaders, education and training modules designed for health professionals and patients and identify ways to integrate the pathway into existing cancer services.

Long-term outcomes of risk-reducing surgery in unaffected women at increased familial risk of breast and/or ovarian cancer.

This study prospectively investigated long-term psychosocial outcomes for women who opted for risk-reducing mastectomy (RRM) and/or risk-reducing salpingo-oophorectomy (RRSO). Unaffected women from high-risk breast cancer families who had completed baseline questionnaires for an existing study and subsequently underwent RRM and/or RRSO, completed measures of perceived breast and ovarian cancer risk, anxiety, depression, cancer-related anxiety, body image, sexual functioning, menopausal symptoms, use of hormone replacement therapy and decision regret 3 years post-surgery. Outcomes were compared to age- and risk-matched controls. Participants (N = 233) were 17 women who had RRM (39 controls), 38 women who had RRSO (94 controls) and 15 women who had RRM + RRSO (30 controls). Women who underwent RRM and those who underwent RRM + RRSO reported reductions in perceived breast cancer risk and perceived breast and ovarian cancer risk respectively, compared to their respective controls. RRM women reported greater reductions in cancer-related anxiety compared with both controls and RRSO women. RRSO women reported more sexual discomfort than controls and more urogenital menopausal symptoms than controls and RRM only women. No differences in general anxiety, depression or body image were observed. Regret was associated with greater reductions in body image since surgery and more sexual discomfort, although overall regret levels were low. Women who undergo RRM experience psychological benefits associated with reduced breast cancer risk. Although women who undergo RRSO experience some deterioration in sexual and menopausal symptoms, they do not regret their surgery decision. It is vital that women considering these procedures receive detailed information about potential psychosocial consequences.

Caring for women with ovarian cancer in the last year of life: a longitudinal study of caregiver quality of life, distress and unmet needs.

PURPOSE: Caregiver burden, quality of life (QOL) and unmet needs are poorly understood, particularly at the end of life. We explored these issues in caregivers of women with ovarian cancer. PATIENTS AND METHODS: The Australian Ovarian Cancer Study (AOCS) is a prospective population-based study of women newly diagnosed with primary epithelial ovarian cancer. Ninety-nine caregivers of women participating in the AOCS QOL sub-study (88% response rate) rated their QOL (SF-12), psychological distress (HADS), optimism (LOT), social support (Duke) and unmet needs (SCNS-carers), and patients rated their QOL (FACT-O), every three months for two years. This analysis included measurements in the patient's last year of life. RESULTS: Caregivers had significantly lower mental and physical QOL than population norms (p<0.01). Mean distress (p=0.01) and unmet needs increased over time, however social support remained constant. In linear mixed models, (using scores for each psychosocial variable over time), optimism (p<0.0001), social support (p<0.0001), higher unmet needs (p=0.008), physical wellbeing (p<0.0001), and time to death (p<0.0001) but not patient QOL, predicted caregiver mental well-being and distress. Highest unmet needs in the last 6months related to managing emotions about prognosis, fear of cancer spread, balancing one's own and the patient's needs, impact of caring on work and making decisions in the context of uncertainty. CONCLUSIONS: Aspects of caregiver functioning, rather than patient quality of life, predict caregiver quality of life and distress. Caregivers need help with managing emotions about prognosis, balancing their own and the patient's needs, work, and decision-making when there is uncertainty.

Misperceptions of ovarian cancer risk in women at increased risk for hereditary ovarian cancer.

This study assessed the sociodemographic, medical and psychological predictors of accuracy of perceived risk in women at increased genetic risk for ovarian cancer. Women participating in a large cohort study who were at increased risk of ovarian and fallopian tube cancer, had no personal history of cancer and had ≥1 ovary in situ at cohort enrollment, were eligible. Women completed self-administered questionnaires and attended an interview at enrollment. Of 2,868 women unaffected with cancer at cohort enrollment, 561 were eligible. 335 women (59.8 %) overestimated their ovarian cancer risk, while 215 women (38.4 %) accurately estimated their risk, and 10 (1.8 %) underestimated it. Women who did not know their mutation status were more likely to overestimate their risk (OR 1.74, 95 % CI 1.10, 2.77, p = 0.018), as were those with higher cancer-specific anxiety (OR 1.05, 95 % CI 1.02, 1.08, p < 0.001) and/or a mother who had been diagnosed with ovarian cancer (OR 1.98, 95 % CI 1.23, 3.18, p = 0.005). Amongst the group of women who did not know their mutation status, 63.3 % overestimated their risk and the mean perceived lifetime risk of developing ovarian cancer was 42.1 %, compared to a mean objective risk of 6.4 %. A large number of women at increased risk for ovarian cancer overestimate their risk. This is of concern especially in women who are at moderately increased risk only; for this sub-group of women, interventions are needed to reduce potentially unnecessary psychological distress and minimise engagement in unnecessary surgery or screening.

Quality of life and treatment response among women with platinum-resistant versus platinum-sensitive ovarian cancer treated for progression: a prospective analysis.

OBJECTIVE: Most women with ovarian cancer relapse and undergo further chemotherapy however evidence regarding the benefits of this for women with platinum-resistant disease is limited. Our objective was to determine whether there was a quality of life improvement or treatment response among women treated for platinum-resistant recurrent ovarian cancer. METHODS: We combined data from 2 studies where women treated with chemotherapy for recurrent ovarian cancer (n=172) completed a quality of life questionnaire every 3 months. Cancers were classified as platinum-resistant if they progressed within 6 months of completing first-line chemotherapy. Mixed effects models were used to analyze change in quality of life during the first 6 months after second-line chemotherapy. RESULTS: One-quarter of women (n=44) were classified as having platinum-resistant disease. Overall, their quality of life did not significantly increase or decrease, following commencement of second-line chemotherapy (least square mean scores=107, 105, 103 at chemotherapy start, 3 and 6 months later, respectively), although 26% of these women reported a meaningful increase and 31% reported a meaningful decline. One-third of the platinum-resistant group responded (11% complete and 21% partial response) to second-line chemotherapy, and this figure increased to 54% among the subset (36%) re-treated with platinum-based agents with or without other agents. Preliminary analyses suggest that quality of life may be higher at chemotherapy initiation in women whose disease responded (median score 121 vs 110). CONCLUSIONS: Overall, quality of life appears to be maintained in women with platinum-resistant ovarian cancer who receive further chemotherapy and some women respond to re-treatment.