Mindfulness-based cognitive therapy for Fear of Recurrence in Ovarian Cancer Survivors (FROCS): a single-arm, open-label, pilot study.

OBJECTIVE: Fear of recurrence is common following treatment for cancer. Our aim was to assess the feasibility of mindfulness-based cognitive therapy (MBCT) to treat fear of cancer recurrence (FCR) in ovarian cancer survivors. METHODS: Investigator initiated, single-arm, open-label, pilot study. Women were eligible after completing adjuvant treatment. The intervention was an 8-week MBCT course of weekly 2-h group sessions. The primary outcome was FCR measured by the FCR inventory. Secondary outcomes were depression and anxiety measured by the Hospital Anxiety and Depression Scale (HADS). The study is registered with the Australian and New Zealand Clinical Trials Registry ACTRN12615000213549. RESULTS: Between May 8, 2015, and May 6, 2019, 33 participants were enrolled. Ten women withdrew. Data were evaluable for 19 participants. There was a significant decrease in FCR at 8 weeks (FCR inventory mean 63.00, SD 27.90) compared to pre-intervention (FCR inventory mean 71.03, SD 31.01) but not at 6 months (FCR inventory mean 63.65, SD 30.08). No differences in depression were observed at baseline (HADS mean 3.42, SD 2.41), 8 weeks (HADS mean 3.10, SD 1.79) and 6 months (HADS mean 2.73, SD 1.88). Anxiety decreased from baseline (HADS mean 8.72, SD 3.99) at both 8 weeks (HADS mean 6.89, SD 2.98) and 6 months (HADS mean 7.06, SD 3.87). CONCLUSIONS: MBCT may be effective as a treatment for FCR and anxiety in women following diagnosis and treatment of ovarian cancer. A randomised controlled trial is required to assess the efficacy of MBCT for FCR but may not be feasible due to high rates of withdrawal.

Living With Multiple Myeloma: A Focus Group Study of Unmet Needs and Preferences for Survivorship Care.

PURPOSE: To describe the unmet informational, psychological, emotional, social, practical, and physical needs and preferences for posttreatment survivorship care of individuals living with multiple myeloma to inform the development of relevant, person-centered, survivorship services. METHODS: An exploratory, descriptive study using 2 focus groups with 14 participants, 6 to 49 months postdiagnosis. RESULTS: Thematic analysis revealed 7 key themes: information needs, experience with health-care professionals, coping with side effects, communicating with family and friends, dealing with emotions, support needs, and living with the chronicity of myeloma. Participants described key characteristics of survivorship care relevant to their needs and indicated they would like a more whole of person approach to follow-up when the main treatment phases had completed. CONCLUSION: Participants in this study described unmet needs across a breadth of domains that varied over time. The development of flexible, person-centered approaches to comprehensive survivorship care is needed to address the considerable quality-of-life issues experienced by people living with multiple myeloma. Nurse-led care may offer 1 viable model to deliver enhanced patient experience-providing the vital "link" that people described as missing from their survivorship care.

A qualitative study of the post-treatment experiences and support needs of survivors of lymphoma.

PURPOSE: To explore the post-treatment experiences and preferences for follow-up support of lymphoma survivors. METHODS: Two focus groups were conducted with 17 participants to explore informational, psychological, emotional, social, practical and physical needs, 6-30 months post-treatment for lymphoma. Perceptions regarding a potential model of survivorship care were also elicited. RESULTS: Thematic content analysis revealed five key themes: Information; Loss and uncertainty; Family, support and post-treatment experience; Transition, connectivity and normalcy, and Person-centred post-treatment care. Participants described a sense of loss as they transitioned away from regular interaction with the hospital at the end of treatment, but also talked about the need to find a "new normal". Establishing post-treatment support structures that can provide individualised information, support, reassurance and referrals to community and peer support were identified as a helpful way to navigate the transition from patient to post-treatment survivor. CONCLUSIONS: Participants in our study articulated a need for a flexible approach to survivorship care, providing opportunities for individuals to access different types of support at different times post-treatment. Specialist post-treatment nurse care coordinators working across acute and community settings may offer one effective model of post-treatment support for survivors of haematological malignancies.

Detecting Distress: Introducing Routine Screening in a Gynecologic Cancer Setting.

BACKGROUND: Cancer results in a wide range of challenges that contribute to patient distress. Detecting distress in patients can result in improved patient outcomes, and early intervention can avoid patients having unmet needs. OBJECTIVES: The aims were to determine the prevalence of distress in patients with gynecologic cancers, identify specific problems, and explore staff perceptions of distress screening. METHODS: A mixed-methods design was used. Quantitative data were collected on distress levels and problems. Qualitative interviews were conducted with healthcare professionals. FINDINGS: Sixty-six percent of women scored 4 or greater on the Distress Thermometer, which was used as the indicator for follow-up or referral. A third reported low distress, and the same proportion was highly distressed. The top five problems identified by participants were nervousness, worry, fears, fatigue, and sleep problems.

A pilot study of routine screening for distress by a nurse and psychologist in an outpatient haematological oncology clinic.

AIM: To explore the: 1) prevalence of distress, type of problems experienced by haematological patients, and referrals for supportive care; 2) effect of demographic and clinical variables on distress, and 3) effect on the time of health professionals conducting the screening in the ambulatory chemotherapy setting. METHODS: Participants completed the National Comprehensive Cancer Network Distress Thermometer and Problem List and had a follow-up screening discussion with a health professional. RESULTS: Of 68 participants, 40% reported significant distress (≥4) on the Distress Thermometer (mean 3.2, SD 2.4). All patients reported physical problems and 72% reported emotional problems-the major contributors to distress and to time spent with the health professional. Distress was unrelated to age, gender or cancer type. Patients were less likely to have significant distress at the end of treatment than at the beginning (OR=0.15, 95% CI: 0.03; 0.72,). Forty patients (59%) were referred to supportive services. The psychologist spent less time with patients compared to the nurse (18 vs 48min, p<0.001). The more emotional problems reported, the greater the time spent with the patient (rs=0.34, p=0.009). CONCLUSIONS: Nurses can appropriately screen for distress and address significant distress reported by haematology patients undergoing chemotherapy without over burdening the nurse or patient.

Women's preferences for contralateral prophylactic mastectomy following unilateral breast cancer: What risk-reduction makes it worthwhile?

OBJECTIVES: Contralateral prophylactic mastectomy (CPM) reduces the risk of contralateral breast cancer (BC) following unilateral BC, but may not increase survival in BRCA1/2 mutation negative women. Despite this, and the risk for adverse physical and psychological impact, uptake is increasing in BRCA1/2 mutation negative women. We aimed to quantify the degree of reduction in lifetime contralateral BC risk women required to justify CPM, and to explore demographic, disease and psychosocial predictors of preferences using Protection Motivation Theory (PMT) as a theoretical framework. Reasoning behind preferences was also examined. MATERIALS AND METHODS: 388 women previously diagnosed with unilateral BC, of negative or unknown BRCA1/2 status, were recruited from an advocacy group research database. Two hypothetical risk trade-off scenarios were used to quantify the reduction in lifetime contralateral BC risk that women judged necessary to justify CPM, using a 5% and 20% baseline. Demographic, disease and PMT measures were assessed using a questionnaire. RESULTS: Most women required their risk to be more than halved from a 5% or 20% baseline to justify CPM. Polarised preferences were also common, with some women consistently accepting or refusing CPM independent of risk/benefit trade-offs. Preferences were associated with coping self-efficacy and having a prior CPM. Explanations for judging CPM worthwhile included reducing or eliminating contralateral BC risk, attaining breast symmetry and reducing worry. CONCLUSION: Risk-reduction preferences were highly variable. Decisive factors in women's preferences for CPM related to clinical, psychological and cosmetic outcomes, but not to demographic or disease characteristics.

Women's preferences for contralateral prophylactic mastectomy: An investigation using protection motivation theory.

OBJECTIVE: Most women diagnosed with unilateral breast cancer without BRCA1 or BRCA2 mutations are at low risk of contralateral breast cancer. Contralateral Prophylactic Mastectomy (CPM) decreases the relative risk of contralateral breast cancer, but may not increase life expectancy; yet international uptake is increasing. This study applied protection motivation theory (PMT) to determine factors associated with women's intentions to undergo CPM. METHODS: Three hundred eighty-eight women previously diagnosed with unilateral breast cancer and of negative or unknown BRCA1 or BRCA2 status were recruited from an advocacy group's research database. Participants completed measures of PMT constructs based on a common hypothetical CPM decision-making scenario. RESULTS: PMT constructs explained 16% of variance in intentions to undergo CPM. Response efficacy (CPM's advantages) and response costs (CPM's disadvantages) were unique individual predictors of intentions. CONCLUSION: Decision-making appears driven by considerations of the psychological, cosmetic and emotional advantages and disadvantages of CPM. Overestimations of threat to life from contralateral breast cancer and survival benefit from CPM also appear influential factors. PRACTICE IMPLICATIONS: Patients require balanced and medically accurate information regarding the pros and cons of CPM, survival rates, and recurrence risks to ensure realistic and informed decision-making.

Decision making, psychological wellbeing and psychosocial outcomes for high risk women who choose to undergo bilateral prophylactic mastectomy - A review of the literature.

A bilateral prophylactic, or preventative, mastectomy (BPM) for women at high risk of developing breast cancer (BC) can reduce their risk of developing the disease by up to 90% (relative risk reduction). An increasing number of women, including young women, are taking up this option. However, there is a dearth of information for younger women (under 40 years) choosing preventative mastectomy. In fact, no studies to date have specifically focused on younger women's experiences of a BPM and investigated their informational needs. The purpose of this review is to report on the current literature surrounding the psychological experience of a BPM and the informational needs for women at high risk of developing BC with a particular emphasis on younger women. Research has highlighted a range of psychological outcomes linked to preventative mastectomy, including positives such as reduced anxiety and negatives including impaired body image and sexuality. The literature strongly suggests women want more information surrounding BPM, particularly related to the after effects of the surgery, and the impact on their psychological wellbeing. Research method limitations and reporting has resulted in conflicting conclusions, making it difficult for women to be well informed. In particular, there has been little focus on the experiences and needs of younger women opting for BPM. Due to the unique needs of younger women and an increase in BPM rates for younger women, it is imperative that the needs of this group are addressed. Together these findings provide justification and recommendation for further research in this area.

Predicting women's intentions for contralateral prophylactic mastectomy: An application of an extended theory of planned behaviour.

PURPOSE: Most women with unilateral breast cancer (BC) without BRCA1/2 gene mutations are at low risk of contralateral breast cancer (CBC). One CBC risk-management option is contralateral prophylactic mastectomy (CPM). While there is no evidence that CPM increases life-expectancy, its uptake is increasing. This study aimed to assess the validity of an extended social-cognition model, the Theory of Planned Behaviour (TPB), in predicting women's intentions to undergo CPM. METHOD: Four hundred women previously treated for BC completed an online survey exploring demographic and disease factors, attitude, subjective norm, perceived behavioural control, anticipated regret, uncertainty avoidance, self-efficacy to not have CPM and intentions to undergo CPM in a common hypothetical decision-making scenario. RESULTS: The TPB uniquely explained 25.7% of intention variance. Greater anticipated regret, uncertainty avoidance and lower self-efficacy to cope with not having CPM were associated with stronger CPM intentions, explaining an additional 7.7%, 10.6% and 2.9% respectively, of variance over and above the TPB. Women who had undergone CPM, had not attended university, and had children reported stronger CPM intentions. CONCLUSIONS: A holistic understanding of CPM decision-making appears to require consideration beyond CBC risk, demographics and disease characteristics, exploring women's expectations about CPM outcomes, others' opinions, and avoidance of emotionality and difficulties associated with not undergoing surgery. This study provides a theoretical basis from which the complexity of CPM decision-making may be understood, and from which resources for patients and treating staff may be developed to support women's informed decision-making aligning with their personal values.

"Undressing" distress among cancer patients living in urban, regional, and remote locations in Western Australia.

PURPOSE: People diagnosed with cancer from rural and remote locations may experience heightened distress because of distance from cancer treatment and support services. We examined whether remoteness and other factors are associated with psychosocial distress and explored commonly reported problems among cancer patients in Western Australia (WA). METHODS: In a cross-sectional study, cancer patients newly referred to a Cancer Council WA Cancer Support Coordinator (CSC) were screened and assessed using the Distress Thermometer (DT) and Problem List (PL) and a standardized form, respectively. The index of remoteness was the Australian Standard Geographical Classification. The association between remoteness, demographic variables, and the frequency of problems endorsed on the PL was analyzed using bivariate analyses and a generalized linear mixed model (GLMM) regression. RESULTS: Of 1032 patients referred to a CSC, 466 were screened (45.2 %) with complete data available for 441 patients. Patients from remote areas reported fewer problems than patients from urban and regional locations. Increasing remoteness was not associated with higher distress (r = -0.04, p = 0.43). Concerns reported differed by remoteness category and included worry, sadness, fears, finances, transportation, and physical symptoms. More emotional problems were independently associated with higher distress (ß = 0.47, p < 0.001), explaining 17.31 % of the variance. CONCLUSIONS: There is no evidence that increasing remoteness is associated with higher distress. Emotional concerns and physical problems appear to be prevalent among cancer patients irrespective of urban or rural location. Specific concerns detected by distress screening, particularly emotional concerns, may warrant further assessment and targeted referrals.

Children's cognitive recovery after day-case general anesthesia: a randomized trial of propofol or isoflurane for dental procedures.

BACKGROUND: Postoperative cognitive dysfunction (POCD) is well established in adults but has been underinvestigated in children. As day-case procedures are increasingly common, it is important to establish whether children suffer significant POCD. Pediatric POCD has been associated with several intravenous and inhalation anesthetics, but isoflurane has not been studied. As evidence indicates superior recovery after propofol, the study compared POCD after propofol or isoflurane anesthesia. OBJECTIVES: To compare the effects of propofol versus isoflurane upon children's POCD. METHODS: Fifty-eight children aged 5-14 years were randomized to propofol (total intravenous anesthesia) or isoflurane for day-case dental procedures. Reaction time (RT), verbal and visual memory, psychomotor coordination, and attention were assessed preoperatively, prior to discharge and at 24 h. RESULTS: Reaction time and psychomotor control were impaired postoperatively in both groups but recovered at 24 h. Delayed verbal recall was significantly impaired only after propofol. Both groups had significant impairment of visual memory postoperatively and at 24 h, and of recognition memory postoperatively only. CONCLUSIONS: Propofol and isoflurane exert similar adverse effects on RT, psychomotor coordination, and visual memory. Selective impairment of verbal recall by propofol is consistent with adult evidence of the drug's effect on retrieval. The enduring postoperative impairment of memory has implications for instructions to parents and caregivers for the safety and well-being of children in the 24 h after day-case anesthesia with propofol and isoflurane.

Families' knowledge, attitudes, and experiences of the tissue donation process.

CONTEXT: Most existing research on the experiences of donor families has been focused on organ donation, with few studies pertaining specifically to the experiences of tissue donor families. Further investigation into tissue donation in Australia is needed in order to improve the process, support, and potential rate of tissue donation consent. OBJECTIVE: To assess the experiences of families of recent tissue donors, to compare changes in the tissue donation process with previously published research, and to identify areas for improvement. DESIGN: Cross-sectional survey by postal questionnaire. SETTING AND PARTICIPANTS: Families who consented to tissue donation through DonateLife Western Australia (the coordinating organization for deceased organ and tissue donation in Western Australia) between 2004 and 2009 were invited to participate. MAIN OUTCOME MEASURES: Donor families' experience, knowledge, and attitudes toward tissue donation and their satisfaction with the approach and quality/effectiveness of support services provided to donor families. RESULTS: One hundred one (39%) of the 256 questionnaires were completed. Most respondents were satisfied with how they were approached, whether by phone or in person. Most participants who received ongoing support after donation (91%) found it beneficial. Nearly half (46%) of respondents supported the use of tissue for research; however, only 28% could recall the topic being discussed at the time of donation. Only 40% of respondents knew of the differences between organ and tissue donation before the donation process. Overall, respondents rated the experience of donating tissue as positive.

Cancer care coordinator: promoting multidisciplinary care--a pilot study in Australian general practice.

AIM: We hypothesised that patients treated for breast cancer would benefit from targeted therapeutic action delivered by general practitioners on the recommendations of a multidisciplinary team based in primary care. METHODS: Patients scheduled for follow-up visits at a hospital surgical clinic were invited to complete a self-administered care needs assessment and be interviewed by a breast care nurse. Members of the multidisciplinary team discussed the audio-recorded interviews within 2 weeks. The team made recommendations for each patient, which were presented to the general practitioner as a suggested 'care plan'. Health status information was collected via the Short Form 36 and Anxiety and Depression data via the Hospital anxiety and Depression Scale at recruitment and 3 months later. RESULTS: Among the 74 women who were invited to participate, 21 were recruited over a 6-month period (28%), 19 of whom completed the study (90%). The mean age was 55 years (range 38-61 years) and the mean time in follow-up was 23 months (range 16-38 months). The team identified a median of three problems per patient (range 2-7) and made an average of two recommendations per patient for referral to an allied health professional (range 0-5). At 3 months, 17 women had attended their general practitioner, 11 of whom felt their condition had improved as a result of the intervention. There was no significant change in Short Form 36 or Hospital Anxiety and Depression Scale score after the intervention. CONCLUSIONS: Primary care-based multidisciplinary review of treated breast cancer patients is feasible and, for most, results in benefit. However, only a minority of eligible patients participated in this pilot study and the logistics of organising the reviews warrants careful consideration.

Breast surgeons' perceptions and attitudes towards contralateral prophylactic mastectomy.

BACKGROUND: The rates of contralateral prophylactic mastectomy (CPM) are increasing worldwide. This study investigated Australian and New Zealand's breast surgeons' perceptions, knowledge and attitudes towards CPM, and explored if demographic characteristics of surgeons were associated with an increased tendency to recommend or perform CPM. METHODS: A cross sectional research design was employed, with breast surgeons completing a self-report questionnaire. The questionnaire collected information including surgeons' perceptions on CPM in their clinical practice, their attitudes and knowledge of CPM and surgeons' demographic information. RESULTS: Eighty-one of 220 (37%) breast surgeons contacted via BreastSurgANZ participated in this study. Forty-four per cent of surgeons perceived that the rates of CPMs they performed had increased over the last year. CPM rates were found to be unrelated to surgeons' age (P = 0.773) or gender (P = 0.941). The main reasons a surgeon recommended a CPM to patients included known BRCA+ mutation, family history of breast cancer and patient factors including fear and anxiety and a desire to avoid further breast cancer treatment. CONCLUSIONS: Breast surgeons perceived that rates of CPM were increasing in their own clinical practice. CPM rates were unrelated to surgeon demographics including age and gender. While surgeons are aware of the objective risk factors that make performing a CPM advisable, they also report taking into account subjective factors, including patient fear and anxiety and a desire for breast symmetry when recommending a CPM.

Developing a self-administered questionnaire as a guide to consultations with women treated for breast cancer.

Background. Health professionals, including general practitioners involved in followup of breast cancer patients, need to systematically assess opportunities to offer patients support with ongoing or new problems. Methods. A self-administered needs assessment questionnaire was developed with reference to a multidisciplinary team. Short, evidence-based, readable questions were emphasized, and questions were tested for face validity. The questions flowed across three domains: physical, social, and psychological. Content validity and user friendliness were assessed. Results. A final set of 30 questions was rated as easy to read and comprehend (Flesch Reading Ease score 65.8 and Flesch-Kincaid Grade Level 6.9). When piloted with twenty-one patients the self-administered questionnaire detected 121 items of unmet need encompassing all three domains. Conclusions. This self-administered questionnaire has the potential to assist in the holistic assessment of breast cancer patient after treatment. The clinical value of the self-administered questionnaire will need to be further tested before it can be widely adopted.