Are Australian Cancer and Palliative Care Nurses Ready to Prescribe Medicines? A National Survey.

OBJECTIVES: Registered nurse prescribing has been put forth, for decades, as an innovative approach to meet growing healthcare needs, particularly in areas of care where medications are essential and highly controlled such as for patients requiring cancer and palliative care. However, the adoption of innovative health delivery models requires acceptance by key stakeholders. This study explores cancer and palliative care nurses' attitudes toward nurse prescribing and their perceptions about educational requirements for a nurse prescriber. DATA SOURCES: A cross-sectional survey was distributed to Australian nurses between March and July 2021. Data were collected using the Advancing Implementation of Nurse Prescribing in Australia online survey. Pearson χ2 tests were used to examine associations between nurses in cancer care, palliative care, and all other specialties on demographics, attitudes to nurse prescribing, and educational perspectives to become prescribers. Of the 4,424 nurses who participated in the survey, 161 nurses identified they worked in cancer care and 109 in palliative care settings. CONCLUSION: Although nurses have a common set of core capabilities, their work contexts and their professional experiences shape their attitudes toward practice. Nurses in cancer care were significantly less certain than nurses in palliative care [χ2(2) = 6.68, P = .04], and nurses from all other specialties [χ2(2) =13.87, P = <.01] of the benefits of nurse prescribing (ie, nurse prescribing would decrease health care system costs, reduce patient risk). Nurses in cancer care were more certain that successfully implementing nurse prescribing requires strong support from their medical and pharmacy colleagues. In addition, nurses working in cancer and palliative care agreed that improving patient care was their primary motivator for becoming a prescriber. IMPLICATIONS FOR NURSING PRACTICE: Open to expanding their role and responsibilities, nurses in cancer and palliative care settings reported that successfully adopting nurse prescribing must be supported by their other healthcare colleagues within the same environment, which demands strong interprofessional collaborative efforts.

Supportive care needs of women with advanced breast cancer in Ghana.

PURPOSE: Most women with breast cancer in Ghana are initially diagnosed with advanced disease, however, there is limited research about Ghanaian women's experiences of living with advanced breast cancer. The study aimed to understand the perceived (felt) and expressed needs of women with advanced breast cancer. METHODS: Using a cross-sectional design, this study assessed the supportive care and spiritual needs, as well as the supportive care service use, of women diagnosed with advanced breast cancer (n = 176) with the Supportive Care Needs Survey-Long Form, the Spiritual Need Assessment for Patients and the modified Client Service Receipt Inventory. RESULTS: Most participants (96.6%) had financial needs and needs in relation to having access to professional counselling. The most prevalent supportive care needs reported were related to health system issues and information needs (90.3%-96.6%). Compared to older women (51.7%), younger women (48.3%) reported greater psychological (p = 0.002) and sexuality needs (p < 0.001) and less religious needs (p = 0.048). Most participants (92.1%) had at least one spiritual need. Many of the available outpatient services were not accessed by the majority of participants (>63%). CONCLUSIONS: The study participants reported high supportive care needs even so, most did not access available relevant services. Study findings indicate that most of the participants were unaware of the health and supportive care services that were available to them or that these services were not easily accessible due to their financial status or geographical location. Targeted interventions are needed to assist the women to address their supportive care, spiritual and service needs.

Documentation of Symptoms in Children Newly Diagnosed With Cancer Highlights the Need for Routine Assessment Using Self-report.

BACKGROUND: Symptom management is a cornerstone of quality care and has the potential to vastly influence patient experiences. The supportive care needs of children, however, are not well described. OBJECTIVE: The aims of this study were to describe documentation about assessment and occurrence of symptoms in medical records of children with cancer and to compare the profile of documented symptoms with child self-report. METHODS: Twelve weeks of medical records of children (8-18 years) newly diagnosed with cancer were reviewed, and data were extracted regarding symptom assessment and occurrence. A second cohort of children attending oncology outpatients completed the electronic Symptom Screening in Pediatrics self-report of symptom bother. They also answered additional questions about other symptoms and the experience of self-report. We evaluated the profile of symptoms recorded as assessed by healthcare providers and self-reported by children. RESULTS: One thousand three hundred sixteen symptoms were identified in 3642 assessments. The symptoms most commonly documented by medical and nursing staff were nausea, pain, and appetite. Allied health staff most frequently documented fatigue, feeling scared, or sad. Forty-eight children completed self-report for the same symptoms and identified fatigue, appetite, and taste were the most bothersome. Children were positive about the experience of completing self-report. CONCLUSION: This study adds further to the evidence about the importance of obtaining information beyond routine clinical assessment from children themselves. IMPLICATIONS FOR PRACTICE: Healthcare providers do not routinely identify all distressing symptoms during clinical encounters. Use of patient-reported outcome measures in children is feasible and acceptable and empowers children to communicate about symptoms, which can facilitate prompt intervention.

Participating doctors' perspectives on the regulation of voluntary assisted dying in Victoria: a qualitative study.

OBJECTIVES: To investigate the perspectives of doctors involved with voluntary assisted dying in Victoria regarding the Voluntary Assisted Dying Act 2017 (Vic) and its operation. DESIGN, SETTING, PARTICIPANTS: Qualitative study; semi-structured interviews with 32 doctors who had participated in the voluntary assisted dying system during its first year of operation (commenced 19 June 2019). Doctors were interviewed during April-July 2020. RESULTS: Three major themes related to problems during the first year of operation of the Act were identified: the statutory prohibition of health professionals initiating discussions with their patients about voluntary assisted dying; the Department of Health and Human Services guidance requirement that all doctor-patient, doctor-pharmacist, and pharmacist-patient interactions be face-to-face; and aspects of implementation, including problems with the voluntary assisted dying online portal, obtaining documentary evidence to establish eligibility, and inadequate resourcing of the Statewide Pharmacy Service. CONCLUSIONS: Doctors reported only limited concerns about the Victorian voluntary assisted dying legislation, but have had some problems with its operation, including implications for the accessibility of voluntary assisted dying to eligible patients. While legislative change may resolve some of these concerns, most can be ameliorated by improving the processes and systems.

The PCOC Symptom Assessment Scale (SAS): A valid measure for daily use at point of care and in palliative care programs.

BACKGROUND: Very few measures are used successfully as part of routine care within national palliative care outcome programs. Only a handful of studies examine these measures. The aim of this study is to evaluate the validity of a measure used in a national outcomes program: the Palliative Care Outcomes Collaboration Symptom Assessment Scale (PCOC SAS). METHODS: A retrospective multi-site cohort study with secondary analysis of routinely collected patient-level data to assess PCOC SAS's internal consistency, construct validity, reliability, interpretability, acceptability and sensitivity. The analyses used two sets, with data collected by inpatient and community palliative care services registered with the Australian national PCOC. RESULTS: Dataset one included 1,117 patients receiving palliative care from 21 services. Dataset two included 5,294 patients receiving palliative care from 119 PCOC services. PCOC SAS demonstrated the ability to detect and discriminate distress by palliative care phase, functional status and diagnosis. Excellent and good convergent and discriminant validity were demonstrated. Fair through to substantial inter-rater and intra-rater reliability levels were evidenced. Sufficient interpretability resulted along with necessary levels of acceptability and sensitivity. CONCLUSION: PCOC SAS is a valid and reliable patient-reported outcome measure suitable for use in routine clinical care with patients requiring palliative and or end-of-life care, including in national outcomes programs.

Unmet Supportive Care Needs and Associated Factors: a Cross-sectional Survey of Chinese Cancer Survivors.

To assess cancer survivors' unmet supportive care needs and associated factors. Limited evidence is available about the supportive care needs of Chinese cancer survivors to inform future service planning. A cross-sectional survey was conducted (STROBE cross-sectional checklist used for report). Standardized questionnaires were administered to 364 cancer survivors. Using the Supportive Care Framework as conceptual framework, factors concerning individuals' cognitive appraisals of their situation and social resources were examined to explore their association with unmet supportive care needs. The most common unmet supportive care needs included concern about the cancer coming back (51.5%), the need for up-to-date information (49.3%), collaborative management with the medical team (48.8%), and financial support (48.8%). Factors associated with greater strength of unmet supportive care needs included being female, having higher personal support, and higher self-efficacy pertaining to social relationship. Having lower support from family and friends was a contributing factor associated with greater strength of unmet needs in comprehensive cancer care and relationship, as was lower self-efficacy pertaining to uncertainty management associated with greater strength of unmet needs in quality of life, and lower self-efficacy pertaining to health professional interaction associated with greater strength of unmet needs in information. Chinese cancer survivors experience a number of unmet supportive needs. Female and rural cancer survivors, and those with lower social support level and self-efficacy are susceptible to having higher levels of unmet supportive care needs. Consistent information provision and peer support system establishment are two potentially beneficial approaches to meet cancer patients' long-term supportive care needs. Females and rural cancer survivors, those with less support from family and friends, and those with lower self-efficacy in interactions with health professionals and in managing uncertainty are especially at risk for unmet supportive care needs.

Use and reporting of experience-based codesign studies in the healthcare setting: a systematic review.

BACKGROUND: Experience-based codesign (EBCD) is an approach to health service design that engages patients and healthcare staff in partnership to develop and improve health services or pathways of care. The aim of this systematic review was to examine the use (structure, process and outcomes) and reporting of EBCD in health service improvement activities. METHODS: Electronic databases (MEDLINE, CINAHL, PsycINFO and The Cochrane Library) were searched to identify peer-reviewed articles published from database inception to August 2018. Search terms identified peer-reviewed English language qualitative, quantitative and mixed methods studies that underwent independent screening by two authors. Full texts were independently reviewed by two reviewers and data were independently extracted by one reviewer before being checked by a second reviewer. Adherence to the 10 activities embedded within the eight-stage EBCD framework was calculated for each study. RESULTS: We identified 20 studies predominantly from the UK and in acute mental health or cancer services. EBCD fidelity ranged from 40% to 100% with only three studies satisfying 100% fidelity. CONCLUSION: EBCD is used predominantly for quality improvement, but has potential to be used for intervention design projects. There is variation in the use of EBCD, with many studies eliminating or modifying some EBCD stages. Moreover, there is no consistency in reporting. In order to evaluate the effect of modifying EBCD or levels of EBCD fidelity, the outcomes of each EBCD phase (ie, touchpoints and improvement activities) should be reported in a consistent manner. TRIAL REGISTRATION NUMBER: CRD42018105879.

Do specialist youth cancer services meet the physical, psychological and social needs of adolescents and young adults? A cross sectional study.

PURPOSE: To assess unmet information and service needs in adolescent and young adult cancer survivors (15-29 years) who access specialist Youth Cancer Services in Queensland, Australia. METHODS: Participants were recruited through Youth Cancer Services across Queensland and completed validated Patient Reported Outcome Measures and Patient Reported Experience Measures to assess unmet needs, symptoms and wellbeing and quality of life (QoL) through an online survey. Analysis included Spearman's correlation and t-tests. RESULTS: The sample (N = 42) was representative in terms of gender, cancer type, location of residence and types of treatment. Total QoL varied substantially within the sample, and 56% of total scores were lower than population norms. QoL was inversely correlated with unmet needs (r = -0.64, p=<0.001). There were no explanatory variables identified associated with higher or lower needs or QoL. Young people reported high needs regarding information and support at diagnosis, and for managing side effects and decision making. Most (61-82%) reported these needs were met. At cancer treatment centres, 42% of young people perceived needs were not met regarding talking to other young people, having access to leisure spaces and relevant supportive information. Participants reported low symptom burden and worry about the future but were concerned about their ability to connect with peers and participate in activities. CONCLUSIONS: While service and information needs are generally met, young people with cancer who reported higher needs also report substantially lower QoL compared to population norms. Addressing these needs may improve QoL. A continued focus on providing support and services to this population is warranted.

Do nurse navigators bring about fewer patient hospitalisations?

PURPOSE: Nurse navigators (NNs) coordinate patient care, improve care quality and potentially reduce healthcare resource use. The purpose of this paper is to undertake an evaluation of hospitalisation outcomes in a new NN programme in Queensland, Australia. DESIGN/METHODOLOGY/APPROACH: A matched case-control study was performed. Patients under the care of the NNs were randomly selected ( n=100) and were matched to historical ( n=300) and concurrent ( n=300) comparison groups. The key outcomes of interest were the number and types of hospitalisations, length of hospital stay and number of intensive care unit days. Generalised linear and two-part models were used to determine significant differences in resources across groups. FINDINGS: The control and NN groups were well matched on socio-economic characteristics, however, groups differed by major disease type and number/type of comorbidities. NN patients had high healthcare needs with 53 per cent having two comorbidities. In adjusted analyses, compared with the control groups, NN patients showed higher proportions of preventable hospitalisations over 12 months, similar days in intensive care and a smaller proportion had overnight stays in hospital. However, the NN patients had significantly more hospitalisations (mean: 6.0 for NN cases, 3.4 for historical group and 3.2 for concurrent group); and emergency visits. RESEARCH LIMITATIONS/IMPLICATIONS: As many factors will affect hospitalisation rates beyond whether patients receive NN care, further research and longer follow-up is required. ORIGINALITY/VALUE: A matched case-control study provides a reasonable but insufficient design to compare the NN and non-NN exposed patient outcomes.

Experiential learning to increase palliative care competence among the Indigenous workforce: an Australian experience.

OBJECTIVES: Improving Indigenous people's access to palliative care requires a health workforce with appropriate knowledge and skills to respond to end-of-life (EOL) issues. The Indigenous component of the Program of Experience in the Palliative Approach (PEPA) includes opportunities for Indigenous health practitioners to develop skills in the palliative approach by undertaking a supervised clinical placement of up to 5 days within specialist palliative care services. This paper presents the evaluative findings of the components of an experiential learning programme and considers the broader implications for delivery of successful palliative care education programme for Indigenous people. METHODS: Semistructured interviews were conducted with PEPA staff and Indigenous PEPA participants. Interviews were recorded, transcribed and key themes identified. RESULTS: Participants reported that placements increased their confidence about engaging in conversations about EOL care and facilitated relationships and ongoing work collaboration with palliative care services. Management support was critical and placements undertaken in settings which had more experience caring for Indigenous people were preferred. Better engagement occurred where the programme included Indigenous staffing and leadership and where preplacement and postplacement preparation and mentoring were provided. Opportunities for programme improvement included building on existing postplacement and follow-up activities. CONCLUSIONS: A culturally respectful experiential learning education programme has the potential to upskill Indigenous health practitioners in EOL care.

Relationships Between Financial Toxicity and Symptom Burden in Cancer Survivors: A Systematic Review.

CONTEXT: Financial toxicity (FT) is used to describe the financial distress/hardship associated with cancer and its treatment. OBJECTIVES: The aim of this review was to explore the relationship between FT and symptom burden. METHOD: A systematic review was performed in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. We searched MEDLINE, EMBASE, and CINAHL (from January 2000 to January 2018) and accepted quantitative, mixed-methods and qualitative studies. Data were extracted and appraised by two reviewers. Owing to significant heterogeneity in the included studies, a narrative synthesis was performed. RESULTS: Nine studies involving 11,544 cancer survivors were included. Of these nine studies, eight were of high quality. The relationships between FT and psychological symptoms and physical symptoms were examined in eight and three studies, respectively. Six studies reported a positive relationship between FT and depression. Three studies found a positive association between FT and anxiety. Limited evidence was found for an association between FT and stress, fear of recurrence, spiritual suffering, pain, and overall symptom burden. CONCLUSIONS: A relatively clear association exists between FT and psychological symptoms. Clinicians should regularly screen for, assess, and manage emotional distress that may be attributed to FT. Although the causal pathway is not known, future intervention studies aimed at minimizing or preventing FT should evaluate psychological symptoms as secondary outcomes. Little is known about the relationships between FT and physical symptoms. Future research should overcome methodological limitations by incorporating longitudinal data collection, use of mixed-methods approaches, and homogeneity of samples.

Harnessing the power of clinician judgement. Identifying risk of deteriorating and dying in people with a haematological malignancy: A Delphi study.

AIM: To provide expert consensus on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. BACKGROUND: Identification of people who are at risk of deteriorating and dying is essential to facilitate patient autonomy, appropriate treatment decisions, and effective end-of-life care. DESIGN: A three-step modified Delphi approach. METHODS: The study was conducted over 6 months (September 2015-March 2016) to gather opinion from an international panel of experts (N = 27) on the clinical indicators that signal a person with a haematological malignancy is at high risk of deteriorating and dying. The first round was informed by a systematic review of prognostic factors present in the final months of life for people with a haematological malignancy. Consensus was achieved if 70% of responses fell within two points on a seven-point Likert-type scale. FINDINGS: Consensus was achieved on the following 11 clinical indicators: (a) advancing age; (b) declining performances status; (c) presence of co-morbidities; (d) disease status; (e) persistent infections (bacterial and viral); (f) fungal infections; (g) severe graft versus host disease; (h) requiring high care; (i) signs of frailty; (j) treatment limitations; and (k) anorexia and/or weight loss. Consensus was also achieved on associated themes and statements for each indicator. CONCLUSION: The findings of this study indicate that subjective clinician-assessed indicators that are contextually relevant to the nature of haematological malignancies are markers of risk. This study has provided valuable preliminary findings on the topic and will inform future research.

Unmet supportive care needs and symptom burden in Taiwanese cancer survivors who have completed primary treatment.

PURPOSE: The number of cancer survivors is increasing due to scientific advances. Previous research on unmet care needs of Taiwanese cancer survivors focused on patients with newly or recently diagnosed cancer. Little is known about the needs and symptom experiences of cancer survivors who have completed treatment. METHODS: This is a cross-sectional survey study. Patients who were over 20 years old; had completed their first-line treatment for their cancer were recruited into the study. The questionnaire included demographic characteristics, a global item of quality of life, the physical effects subscale of the Cancer Survivors' Survey of Needs (CSSN), and Cancer Survivors' Unmet Needs measure (CaSUN). RESULTS: One hundred and twenty cancer survivors participated in this study. Body changes, loss of strength, weight change, memory and concentration and fatigue were the top five symptom concerns. Nearly half of the Taiwanese survivors reported needs for up-to-date information, understandable information, and an ongoing case manager were not met. On average, survivors reported 7.68 unmet care needs. Male gender, being under 50 years of age, and having a solid tumor were associated with higher levels of unmet needs. CONCLUSIONS: This study provides preliminary information about the type and levels of physical symptom concerns and supportive care needs in long-term cancer survivors in Taiwan. Specific groups of cancer survivors whose needs were unmet were identified. The current healthcare system is not sufficiently meeting the needs of cancer survivors and more efforts are required to advance survivorship care and research in Taiwan.

Health service utilisation during the last year of life: a prospective, longitudinal study of the pathways of patients with chronic kidney disease stages 3-5.

BACKGROUND: Chronic kidney disease (CKD) is a growing global problem affecting around 10% of many countries' populations. Providing appropriate palliative care services (PCS) to those with advanced kidney disease is becoming paramount. Palliative/supportive care alongside usual CKD clinical treatment is gaining acceptance in nephrology services although the collaboration with and use of PCS is not consistent. METHODS: The goal of this study was to track and quantify the health service utilisation of people with CKD stages 3-5 over the last 12 months of life. Patients were recruited from a kidney health service (Queensland, Australia) for this prospective, longitudinal study. Data were collected for 12 months (or until death, whichever was sooner) during 2015-17 from administrative health sources. Emergency department presentations (EDP) and inpatient admissions (IPA) (collectively referred to as critical events) were reviewed by two Nephrologists to gauge if the events were avoidable. RESULTS: Participants (n = 19) with a median age of 78 years (range 42-90), were mostly male (63%), 79% had CKD stage 5, and were heavy users of health services during the study period. Fifteen patients (79%) collectively recorded 44 EDP; 61% occurred after-hours, 91% were triaged as imminently and potentially life-threatening and 73% were admitted. Seventy-four IPA were collectively recorded across 16 patients (84%); 14% occurred on weekends or public holidays. Median length of stay was 3 days (range 1-29). The median number of EDP and IPA per patient was 1 and 2 (range 0-12 and 0-20) respectively. The most common trigger to both EDP (30%) and IPA (15%) was respiratory distress. By study end 37% of patients died, 63% were known to PCS and 11% rejected a referral to a PCS. All critical events were deemed unavoidable. CONCLUSIONS: Few patients avoided using acute health care services in a 12 month period, highlighting the high service needs of this cohort throughout the long, slow decline of CKD. Proactive end-of-life care earlier in the disease trajectory through integrating renal and palliative care teams may avoid acute presentations to hospital through better symptom management and planned care pathways.

Tracking patients with advanced kidney disease in the last 12 months of life.

BACKGROUND: There is increasing recognition of the clinical need for timely and coordinated supportive and palliative care for those with terminal organ failure. OBJECTIVE: To describe symptoms, quality of life and supportive care needs in the anticipated 12-month period prior to death in adults with chronic kidney disease (CKD) stages 4 or 5. METHOD: An observational, prospective, longitudinal design was used to follow 19 patients. The measures used were the Chronic Kidney Disease-Symptom Burden Index (CKD-SBI), the Australian Karnofsky Performance Scale (AKPS), the Functional Assessment of Chronic illness Therapy Palliative-14 (FACIT PAL-14), the Assessment of Quality of Life 6 Dimensions (AQoL-6D) and the Sheffield Profile for Assessment and Referral for Care (SPARC). Data were collected at study entry and three monthly until death or study end. RESULTS: Patients' median age was 78 years (range 42-90), most were male (63%), 10 were receiving dialysis and seven died during the study. The most prevalent symptoms reported differed from those that were most troublesome. The median AKPS score did not change over time (60). Quality of life remained steady over time [FACIT-PAL median range: 43.5-46; AQoL-6D means range: 0.66 (SD 0.19) to 0.75 (SD 0.2)]. Supportive care needs were few. CONCLUSION: We found a substantial symptom burden and slow functional decline in this group of patients. Regular assessment of both symptoms and QOL is warranted particularly if clinical experience indicates that the person is likely to be in their last year of life. Integrated supportive care programmes could assist with easing symptom burden during this time.

Clinical and economic outcomes of nurse-led services in the ambulatory care setting: A systematic review.

BACKGROUND: With the increasing burden of chronic and age-related diseases, and the rapidly increasing number of patients receiving ambulatory or outpatient-based care, nurse-led services have been suggested as one solution to manage increasing demand on the health system as they aim to reduce waiting times, resources, and costs while maintaining patient safety and enhancing satisfaction. OBJECTIVES: The aims of this review were to assess the clinical effectiveness, economic outcomes and key implementation characteristics of nurse-led services in the ambulatory care setting. DESIGN: A systematic review was conducted using the standard Cochrane Collaboration methodology and was prepared in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. DATA SOURCES: We searched the Cochrane Central Register of Controlled Trials (CENTRAL) on The Cochrane Library, MEDLINE EBSCO, CINAHL EBSCO, and PsycINFO Ovid (from inception to April 2016). REVIEW METHODS: Data were extracted and appraisal undertaken. We included randomised controlled trials; quasi-randomised controlled trials; controlled and non-controlled before-and-after studies that compared the effects of nurse-led services in the ambulatory or community care setting with an alternative model of care or standard care. RESULTS: Twenty-five studies of 180,308 participants were included in this review. Of the 16 studies that measured and reported on health-related quality of life outcomes, the majority of studies (n = 13) reported equivocal outcomes; with three studies demonstrating superior outcomes and one demonstrating inferior outcomes in comparison with physician-led and standard care. Nurse-led care demonstrated either equivalent or better outcomes for a number of outcomes including symptom burden, self-management and behavioural outcomes, disease-specific indicators, satisfaction and perception of quality of life, and health service use. Benefits of nurse-led services remain inconclusive in terms of economic outcomes. CONCLUSIONS: Nurse-led care is a safe and feasible model of care for consideration across a number of ambulatory care settings. With appropriate training and support provided, nurse-led care is able to produce at least equivocal outcomes or at times better outcomes in terms of health-related quality of life compared to physician-led care or standard care for managing chronic conditions. There is a lack of high quality economic evaluations for nurse-led services, which is essential for guiding the decision making of health policy makers. Key factors such as education and qualification of the nurse; self-management support; resources available for the nurse; prescribing capabilities; and evaluation using appropriate outcome should be carefully considered for future planning of nurse-led services.

Perceptions of the care received from Australian palliative care services: A caregiver perspective.

ABSTRACTBackground:Caregiver satisfaction and experience surveys help health professionals to understand, measure, and improve the quality of care provided for patients and their families. OBJECTIVE: Our aim was to explore caregiver perceptions of the care received from Australian specialist palliative care services. METHOD: Caregivers of patients receiving palliative care in services registered with Australia's Palliative Care Outcomes Collaboration were invited to participate in a caregiver survey. The survey included the FAMCARE-2 and four items from the Ongoing Needs Identification: Caregiver Profile questionnaire. RESULTS: Surveys were completed by 1,592 caregivers from 49 services. Most respondents reported high satisfaction and positive experiences. Caregivers receiving care from community-based palliative care teams were less satisfied with the management of physical symptoms and comfort (odds ratio [OR] = 0.29; 95% confidence interval [CI95%] = 0.14, 0.59), with patient psychological care (OR = 0.56; CI95% = 0.32, 0.98), and with family support (OR = 0.52; CI95% = 0.35, 0.77) than caregivers of patients in an inpatient setting. If aged over 60 years, caregivers were less likely to have their information needs met regarding available support services (OR = 0.98; CI95% = 0.97, 0.98) and carer payments (OR = 0.99; CI95% = 0.98, 1.00). Also, caregivers were less likely to receive adequate information about carer payments if located in an outer regional area (OR = 0.41; CI95% = 0.25, 0.64). With practical training, caregivers receiving care from community services reported inadequate information provision to support them in caring for patients (OR = 0.60; CI95% = 0.45, 0.81). SIGNIFICANCE OF RESULTS: While our study identified caregivers as having positive and satisfactory experiences across all domains of care, there is room for improvement in the delivery of palliative care across symptom management, as well as patient and caregiver support, especially in community settings. Caregiver surveys can facilitate the identification and evaluation of both patients' and caregivers' experiences, satisfaction, distress, and unmet needs.

Don't need help, don't want help, can't get help: How patients with brain tumors account for not using rehabilitation, psychosocial and community services.

OBJECTIVE: To understand why some adults with primary brain tumors do not use support services despite indications of a need for help. METHODS: Nineteen adults recently diagnosed with primary brain tumors participated in semi-structured interviews. Thematic analysis was used to identify recurrent ways participants explained their non-use of support services. RESULTS: Some patients indicated that they did not use support services as they did not need help, in particular reporting positive experiences relative to their expectations or to others, that their needs were met, or difficulties recognizing their needs. Some patients reported not wanting help, citing preferences to self-manage, other priorities, or negative perceptions of the services available. Many patients identified barriers to support service utilization, particularly problems recognizing that services could address their needs and that their needs were valid concerns. CONCLUSION: The gap between patients' needs and their service use may result from patients' expectations from the medical system, shifting of standards for well-being, cognitive changes, and access issues. PRACTICE IMPLICATIONS: Addressing knowledge barriers and perceptions relating to help-seeking, as well as recognizing the challenges specific to this patient group in terms of need recognition and access issues, may assist in improving patients' physical, psychological and social well-being.

Cost-effectiveness of a pragmatic exercise intervention for women with breast cancer: results from a randomized controlled trial.

OBJECTIVE: To report on the cost-effectiveness of the Exercise for Health trial, comparing an exercise intervention with usual care during and following treatment for women with breast cancer. METHODS: Women with breast cancer were randomized to an 8-month exercise intervention (involving regular contact with an exercise physiologist over the phone, n = 67, or home delivered face to face, n = 67) or usual care (n = 60) group and were assessed pre-intervention (5 weeks post-surgery), mid-intervention (6 months post-surgery), and 10 weeks post-intervention (12 months post-surgery). The benefit measures were "number of improvers" in quality of life (FACT-B+4) and quality-adjusted life years (QALYs). Data on provider, patient, and government costs were used to consider 2 cost scenarios: (1) a service provider model and (2) a private model. RESULTS: There were 69 improvers in the intervention group compared with 21 in the usual care group (odds ratio 2.09, 95% confidence interval 1.08, 4.01; P = .033). The incremental cost per improver was A$2282 to A$2644. Quality-adjusted life years gain for the intervention group versus the usual care group was 0.009, with incremental cost per QALY gain for models 1 and 2 being A$105 231 and A$90 842, respectively. However, sensitivity analyses indicate that incremental cost per QALY gained was volatile to EuroQol-5D-3L weights. CONCLUSIONS: Findings suggest that a pragmatic exercise intervention yields more women with markedly improved quality of life after breast cancer than usual care and may be cost-effective. The results are less certain in terms of incremental cost per quality-adjusted life years; however, this may be an inappropriate measure for reflecting exercise benefit for women with breast cancer.