Search

Abstract Background The Stop Cancer PAIN Trial was a phase III pragmatic stepped wedge cluster randomised controlled trial which compared effectiveness of screening and guidelines with or without implementation strategies for improving pain in adults with cancer attending six Australian outpatient comprehensive cancer centres (n = 688). A system for pain screening was introduced before observation of a ‘control’ phase. Implementation strategies introduced in the ‘intervention’ phase included: (1) audit of adherence to guideline recommendations, with feedback to clinical teams; (2) health professional education via an email-administered ‘spaced education’ module; and (3) a patient education booklet and self-management resource. Selection of strategies was informed by the Capability, Opportunity and Motivation Behaviour (COM-B) Model (Michie et al., 2011) and evidence for each strategy’s stand-alone effectiveness. A consultant physician at each centre supported the intervention as a ‘clinical champion’. However, fidelity to the intervention was limited, and the Trial did not demonstrate effectiveness. This paper reports a sub-study of the Trial which aimed to identify factors inhibiting or enabling fidelity to inform future guideline implementation initiatives. Methods The qualitative sub-study enabled in-depth exploration of factors from the perspectives of personnel at each centre. Clinical champions, clinicians and clinic receptionists were invited to participate in semi-structured interviews. Analysis used a framework method and a largely deductive approach based on the COM-B Model. Results Twenty-four people participated, including 15 physicians, 8 nurses and 1 clinic receptionist. Coding against the COM-B Model identified ‘capability’ to be the most influential component, with ‘opportunity’ and ‘motivation’ playing largely subsidiary roles. Findings suggest that fidelity could have been improved by: considering the readiness for change of each clinical setting; better articulating the intervention’s value proposition; defining clinician roles and responsibilities, addressing perceptions that pain care falls beyond oncology clinicians’ scopes of practice; integrating the intervention within existing systems and processes; promoting patient-clinician partnerships; investing in clinical champions among senior nursing and junior medical personnel, supported by medical leaders; and planning for slow incremental change rather than rapid uptake. Conclusions Future guideline implementation interventions may require a ‘meta-implementation’ approach based on complex systems theory to successfully integrate multiple strategies. Trial registration Registry: Australian New Zealand Clinical Trials Registry; number: ACTRN 12615000064505; data: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspxid=367236&isReview=true .

Introduction Optimally measuring improvements in chronic breathlessness in clinical practice and research continues to evolve. The aim of this study was to consider the performance of uni-dimensional measures in chronic breathlessness limiting exertion.Methods We report five measures of breathlessness (intensity: worst, best and average in the previous 24 hours; breathlessness now; and an affective component unpleasantness now) and two clinical thresholds over baseline on their 0–100 mm visual analogue scale (8.9 mm absolute improvement; and 15% relative improvement) collected in a multi-site, randomised, double-blind, parallel-arm, placebo-controlled trial of regular, low-dose, sustained-release morphine for people with chronic breathlessness with optimally treated underlying causes.Results Participants (n=284) were mostly elderly men with severe, chronic breathlessness. Worst breathlessness in the previous 24 hours showed improvement in people with more severe breathlessness and chronic obstructive pulmonary disease. By contrast, breathlessness now and average breathlessness in the previous 24 hours generated similar patterns of response, as did unpleasantness now and breathlessness now. Best breathlessness added little value. The two clinical thresholds showed differing patterns of significance.Discussion Consistent with other recent work, worst breathlessness may be an important uni-dimensional outcome in evaluating chronic breathlessness clinically and in research. This study does not support a differential between unpleasantness now and breathlessness now, previously observed in laboratory-generated, acute-on-chronic breathlessness. Timeframe for recall (now or the last 24 hours) and the threshold for a clinical meaningful improvement (absolute (8.9 mm) or relative (15%)) affect assessment performance.

IntroductionPopulation cancer registries record primary cancer incidence, mortality and survival for whole populations, but not more timely outcomes such as cancer recurrence, secondary cancers or other complications that disrupt event-free survival. Nonetheless, indirect evidence may be inferred from treatment data to provide indicators of recurrence and like events, which can facilitate earlier assessment of care outcomes. The present study aims to infer such evidence by applying algorithms to linked cancer registry and treatment data obtained from hospitals and universal health insurance claims applicable to the New South Wales (NSW) population of Australia.Materials and methodsPrimary invasive cancers from the NSW Cancer Registry (NSWCR), diagnosed in 2001–2018 with localized or regionalized summary stage, were linked to treatment data for five common Australian cancers: breast, colon/rectum, lung, prostate, and skin (melanomas). Clinicians specializing in each cancer type provided guidance on expected treatment pathways and departures to indicate remission and subsequent recurrence or other disruptive events. A sample survey of patients and clinicians served to test initial population-wide results. Following consequent refinement of the algorithms, estimates of recurrence and like events were generated. Their plausibility was assessed by their correspondence with expected outcomes by tumor type and summary stage at diagnosis and by their associations with cancer survival.ResultsKaplan-Meier product limit estimates indicated that 5–year cumulative probabilities of recurrence and other disruptive events were lower, and median times to these events longer, for those staged as localized rather than regionalized. For localized and regionalized cancers respectively, these were: breast - 7% (866 days) and 34% (570 days); colon/rectum - 15% (732 days) and 25% (641 days); lung - 46% (552 days) and 66% (404 days); melanoma - 11% (893 days) and 38% (611 days); and prostate - 14% (742 days) and 39% (478 days). Cases with markers for these events had poorer longer-term survival.ConclusionsThese population-wide estimates of recurrence and like events are approximations only. Absent more direct measures, they nonetheless may inform service planning by indicating population or treatment sub-groups at increased risk of recurrence and like events sooner than waiting for deaths to occur.

Introduction Disability, resulting from altered interactions between individuals and their environment, is a worldwide issue causing inequities and suffering. Many diseases associated with breathlessness cause disability but the relationship between disability and the severity of breathlessness itself is unknown.This study evaluated associations between disability using the WHO’s Disability Assessment Schedule (WHODAS) 2.0 and levels of long-term breathlessness limiting exertion.Methods This population-based, cross-sectional online survey (n=10 033) reflected the most recent national census (2016) by age, sex, state/territory of residence and rurality. Assessments included self-reported disability (WHODAS 2.0 12-item (range 12 (no disability) to 60 (most severe disability)) assessed in 6 domains) and long-term breathlessness limiting exertion (modified Medical Research Council (mMRC) breathlessness scale; 0–4 (4—most severe)). Days in the last month affected by breathlessness were reported.Results Of respondents (52% women; mean age 45), mean total disability score was 20.9 (SD 9.5). 42% (n=4245) had mMRC >0 (mMRC1 31% (n=3139); mMRC2 8% (n=806); mMRC3,4 3% (n=300)). Every level of long-term breathlessness limiting exertion was associated with greater levels of disability (total p

Abstract Background Night eating syndrome (NES) is a unique eating disorder characterised by evening hyperphagia and nocturnal ingestions which cause significant distress and/or impairment in functioning. Despite the growing literature, NES remains poorly understood and under diagnosed. As such, this study aims to compare the prevalence of physical health conditions in participants with NES when compared to participants without an eating disorder (ED) and participants with other eating disorders (including anorexia nervosa (AN), binge eating disorder (BED) and bulimia nervosa (BN)) in a general population Australian sample of adults. Methods The data for this study were obtained from the 2017 Health Omnibus Survey (HOS) a multi-stage, cross-sectional survey, conducted by Harrison Research in South Australia. This current study focused on 2547 participants over 18 years of age and specific questions from this population survey including those related to participant demographics and health. Results This study identified that participants who screened positive for night eating syndrome (spNES) when compared to participants with other eating disorders (ED) or no ED diagnosis, were significantly more likely to have an increased age, be female, have lower levels of education and have lower household income. Additionally, the spNES group was significantly associated with sleep apnoea (p = 0.031), insomnia or other sleep problems (p

There are no known estimates of the prevalence, severity and impacts from breathlessness in low- and middle-income countries. This study aimed to explore the prevalence, severity, self-attributed underlying conditions and impacts of breathlessness limiting exertion in community-dwelling adults in India. This exploratory, population-based online survey recruited a pre-planned sample of 3,000 adult respondents stratified by age, sex and rurality (quotas as per the 2011 Indian National Census). Measures included: demographics; breathlessness limiting exertion (modified Medical Research [mMRC] scale); health-related quality of life (EQ-5D-5L); and disability (World Health Organisation's Disability Assessment Schedule 2.0 12-item questionnaire [WHODAS-12]). Respondents (n = 3,046) had a mean age of 38 years (SD 15); 57% were male, 59% lived in rural areas and 33% had completed 12th grade. Breathlessness limiting exertion (mMRC ≥1) was reported by 44%, mostly attributed to poor nutrition (28%), lung conditions excluding tuberculosis (17%) or anaemia (13%). Compared to those without breathlessness, a higher proportion of people with breathlessness (mMRC ≥1) reported problems across all EQ-5D-5L dimensions. Most people reporting breathlessness (81%) indicated the symptom had adversely affected their normal activities. Disability scores (WHODAS-12 total and individual domains) increased as breathlessness worsened. To conclude, in India, conservative estimates indicate 626 million people live with breathlessness of whom 52 million people live with severe breathlessness. The symptom is associated with poorer health-related quality of life and marked disability, including reduced ability to perform daily activities.

BackgroundThe routine measurement of patient-reported outcomes in cancer clinical care using electronic patient-reported outcome measures (ePROMs) is gaining momentum worldwide. However, a deep understanding of the mechanisms underpinning ePROM interventions that could inform their optimal design to improve health outcomes is needed. ObjectiveThis study aims to identify the implicit mechanisms that underpin the effectiveness of ePROM interventions and develop program theories about how and when ePROM interventions improve health outcomes. MethodsA realist synthesis of the literature about ePROM interventions in cancer clinical care was performed. A conceptual framework of ePROM interventions was constructed to define the scope of the review and frame the initial program theories. Literature searches of Ovid MEDLINE, Ovid Embase, Scopus, and CINAHL, supplemented by citation tracking, were performed to identify relevant literature to develop, refine, and test program theories. Quality appraisal of relevant studies was performed using the Mixed Methods Appraisal Tool. ResultsOverall, 61 studies were included in the realist synthesis: 15 (25%) mixed methods studies, 9 (15%) qualitative studies, 13 (21%) descriptive studies, 21 (34%) randomized controlled trials, and 3 (5%) quasi-experimental studies. In total, 3 initial program theories were developed regarding the salient components of ePROM interventions—remote self-reporting, real-time feedback to clinicians, and clinician-patient telecommunication. The refined theories posit that remote self-reporting enables patients to recognize and report symptoms accurately and empowers them to communicate these to clinicians, real-time feedback prompts clinicians to manage symptoms proactively, and clinician-patient telephone interactions and e-interactions between clinic encounters improve symptom management by reshaping how clinicians and patients communicate. However, the intervention may not achieve the intended benefit if ePROMs become a reminder to patients of their illness and are not meaningful to them and when real-time feedback to clinicians lacks relevance and increases the workload. ConclusionsThe key to improving health outcomes through ePROM interventions is enabling better symptom reporting and communication through remote symptom self-reporting, promoting proactive management of symptoms through real-time clinician feedback, and facilitating clinician-patient interactions. Patient engagement with self-reporting and clinician engagement in responding to feedback are vital and may reinforce each other in improving outcomes. Effective ePROM interventions might fundamentally alter how clinicians and patients interact between clinic encounters.

Abstract Background The incidence of pregnancy-associated cancer (PAC), comprising cancer diagnosed during pregnancy or within one year postpartum, is increasing. We investigated the obstetric management and outcomes of women with PAC and their babies. Methods A population-based observational study of all women who gave birth between 1994 and 2013 in New South Wales, Australia. Women were stratified into three groups: those diagnosed during pregnancy (gestational cancer group), those diagnosed within one year of giving birth (postpartum cancer group), and a no-PAC group. Generalized estimating equations were used to examine the association between PAC and adverse maternal and neonatal outcomes. Results One million seven hundred eighty-eight thousand four hundred fifty-onepregnancies were included—601 women (614 babies) were in the gestational cancer group, 1772 women (1816 babies) in the postpartum cancer group, and 1,786,078 women (1,813,292 babies) in the no-PAC group. The overall crude incidence of PAC was 132.7/100,000 women giving birth. The incidence of PAC increased significantly over the twenty-year study period from 93.5/100,000 in 1994 to 162.5/100,000 in 2013 (2.7% increase per year, 95% CI 1.9 – 3.4%, p-value

IntroductionDying and death are public health concerns, but little is known about public health interventions that target populations living with life-limiting illnesses. This gap makes it difficult to identify best-practice public health interventions for this population and to achieve public health objectives. The study aimed to describe a public health intervention that intends to improve population-level outcomes using point-of-care and patient-reported outcomes.MethodsA case study approach, informed by the Organization for Economic Co-operation and Development's (OECD) Best-Practice Public Health Framework, was used to describe coverage, effectiveness, and equity using mixed methods. Data from 2012 to 2022 were analyzed.ResultsOver the 10-year period, the number of deaths recorded in the programme (n = 16,358 to 32,421, +98.2%) as well as the percentage of the population that might benefit from palliative care increased (14.8% to 25.1%). The median age of those admitted for care (74 to 77 years) and the proportion of services participating in the programme located in outer regional and remote areas of Australia increased (2012: 59; 2022: 94; +5.4%). The access by patients that experience the greatest socioeconomic disadvantage decreased (2012: 18.2% n = 4,918; 2022: 15.9% n = 9,525). Improvements in relation to moderate distress related to pain were identified (2012: 63% n = 8,751, 2022: 69% n = 13,700), and one in five instances of severe distress related to pain did not improve (2012: 20% n = 781; 2022: 19% n = 635).ConclusionPopulation-level, patient-reported outcome data are useful and necessary in addressing public health objectives in populations with life-limiting illnesses. Our application of the OECD's Best-Practice Public Health Framework has helped to identify and describe a national intervention that may be transferred to other settings to address health promotion objectives. This may help improve the targeting of treatments to improve pain and issues related to equity.

Chronic breathlessness, a persistent and disabling symptom despite optimal treatment of underlying causes, is a frightening symptom with serious and widespread impact on patients and their carers. Clinical guidelines support the use of morphine for the relief of chronic breathlessness in common long-term conditions, but questions remain around clinical effectiveness, safety and longer term (>7 days) administration. This trial will evaluate the effectiveness of low-dose oral modified-release morphine in chronic breathlessness. This is a multicentre, parallel group, double-blind, randomised, placebo-controlled trial. Participants (n=158) will be opioid-naïve with chronic breathlessness due to heart or lung disease, cancer or post-coronavirus disease 2019. Participants will be randomised 1:1 to 5 mg oral modified-release morphine/placebo twice daily and docusate/placebo 100 mg twice daily for 56 days. Non-responders at Day 7 will dose escalate to 10 mg morphine/placebo twice daily at Day 15. The primary end-point (Day 28) measure will be worst breathlessness severity (previous 24 h). Secondary outcome measures include worst cough, distress, pain, functional status, physical activity, quality of life, and early identification and management of morphine-related side-effects. At Day 56, participants may opt to take open-label, oral modified-release morphine as part of usual care and complete quarterly breathlessness and toxicity questionnaires. The study is powered to be able to reject the null hypothesis and an embedded normalisation process theory-informed qualitative substudy will explore the adoption of morphine as a first-line pharmacological treatment for chronic breathlessness in clinical practice if effective.

Abstract Objective To compare treatment within 12 months of diagnosis, and survival by country of birth for people diagnosed with invasive non-small cell lung cancer (NSCLC) in New South Wales (NSW), Australia. Design, patients, and setting A population-based cohort study of NSW residents diagnosed with NSCLC in 2003–2016 using de-identified linked data from the NSW Cancer Registry, NSW Admitted Patient Data collection, Emergency Departments, Medicare Benefits and Pharmaceutical Benefits Scheme, and National Death Index. Main outcome measures Odds of receiving any treatment, surgery, systemic therapy, or radiotherapy respectively, in the 12 months following diagnosis were calculated using multivariable logistic regression. The hazard of death (all-cause) at one- and five-years following diagnosis was calculated using multivariable proportional hazards regression. Results 27,114 People were recorded with NSCLC in the 14-year study period. Higher percentages of older males from European countries applied in the earlier years, with a shift to younger people from South East Asia, New Zealand, and the Middle East. Adjusted analyses indicated that, compared with the Australian born, people from European countries were more likely to receive treatment, and, specifically surgery. Also, people from Asian countries were more likely to receive systemic therapy but less likely to receive radiotherapy. Survival at one- and five-years following diagnosis was higher for people born in countries other than Australia, New Zealand the United Kingdom and Germany. Conclusions Variations exist in treatment and survival by country of birth in NSW. This may be affected by differences in factors not recorded in the NSW Registry, including use of general health services, family histories, underlying health conditions, other intrinsic factors, and cultural, social, and behavioural influences.

Abstract Background Relatively little is understood about real-world provision of oncology care in ambulatory outpatient clinics (OPCs). This study aimed to: 1) develop an understanding of behaviours and practices inherent in the delivery of cancer services in OPC common areas by characterising the organisation and implementation of this care; and 2) identify barriers to, and facilitators of, the delivery of this care in OPC common areas. Methods A purpose-designed ethnographic study was employed in four public hospital OPCs. Informal field scoping activities were followed by in-situ observations, key informant interviews and document review. A view of OPCs as complex adaptive systems was used as a scaffold for the data collection and interpretation, with the intent of understanding ‘work as done’. Data were analysed using an adapted “Qualitative Rapid Appraisal, Rigorous Analysis” approach. Results Field observations were conducted over 135 h, interviews over 6.5 h and documents were reviewed. Analysis found six themes. Staff working in OPCs see themselves as part of small local teams and as part of a broader multidisciplinary care team. Professional role boundaries could be unclear in practice, as duties expanded to meet demand or to stop patients “falling through the cracks.” Formal care processes in OPCs were supported by relationships, social capital and informal, but invaluable, institutional expertise. Features of the clinic layout, such as the proximity of departments, affected professional interactions. Staff were aware of inter- and intra-service communication difficulties and employed strategies to minimise negative impacts on patients. We found that complexity, coordination, culture and capacity underpin the themes that characterise this care provision. Conclusions The study advances understanding of how multidisciplinary care is delivered in ambulatory settings and the factors which promote or inhibit effective care practice. Time pressures, communication challenges and competing priorities can pose barriers to care delivery. OPC care is facilitated by: self-organisation of participants; professional acumen; institutional knowledge; social ties and relationships between and within professional groups; and commitment to patient-centred care. An understanding of the realities of ‘work-as-done’ may help OPCs to sustain high-quality care in the face of escalating service demand.

Introduction Many patients experience unrelieved neuropathic cancer-related pain. Most current analgesic therapies have psychoactive side effects, lack efficacy data for this indication and have potential medication-related harms. The local anaesthetic lidocaine (lignocaine) has the potential to help manage neuropathic cancer-related pain when administered as an extended, continuous subcutaneous infusion. Data support lidocaine as a promising, safe agent in this setting, warranting further evaluation in robust, randomised controlled trials. This protocol describes the design of a pilot study to evaluate this intervention and explains the pharmacokinetic, efficacy and adverse effects evidence informing the design.Methods and analysis A mixed-methods pilot study will determine the feasibility of an international first, definitive phase III trial to evaluate the efficacy and safety of an extended continuous subcutaneous infusion of lidocaine for neuropathic cancer-related pain. This study will comprise: a phase II double-blind randomised controlled parallel-group pilot of subcutaneous infusion of lidocaine hydrochloride 10% w/v (3000 mg/30 mL) or placebo (sodium chloride 0.9%) over 72 hours for neuropathic cancer-related pain, a pharmacokinetic substudy and a qualitative substudy of patients’ and carers’ experiences. The pilot study will provide important safety data and help inform the methodology of a definitive trial, including testing proposed recruitment strategy, randomisation, outcome measures and patients’ acceptability of the methodology, as well as providing a signal of whether this area should be further investigated.Ethics and dissemination Participant safety is paramount and standardised assessments for adverse effects are built into the trial protocol. Findings will be published in a peer-reviewed journal and presented at conferences. This study will be considered suitable to progress to a phase III study if there is a completion rate where the CI includes 80% and excludes 60%. The protocol and Patient Information and Consent Form have been approved by Sydney Local Health District (Concord) Human Research Ethics Committee 2019/ETH07984 and University of Technology Sydney ETH17-1820.Trial registration number ANZCTR ACTRN12617000747325.

IntroductionHealth-related quality of life (HRQoL) is essential for human wellbeing, influenced by a complex interplay of factors, and is reported lower in women than men. We aimed to evaluate which factors were the most important for HRQoL in a middle-aged general population.MethodsThis was a cross-sectional, multi-centre study of 29,212 men (48%) and women (52%) aged 50-64 in the general population in Sweden. Physical and mental HRQoL (0-100) was assessed using the Short Form 12 questionnaire, and association was evaluated for 356 variables including demographics, lifestyle, symptoms, physiological measurements, and health conditions. Using machine learning, each variable´s importance for HRQoL was measured by an importance score, comparable to effect size, and summarised in 54 factors, in men and women separately.ResultsMen and women had similar mean and standard deviation (SD) scores for physical HRQoL (53.4 [SD 8.1] vs 51.4 [9.7]) and mental HRQoL (37.1 [5.0] vs 37.3 [5.4]). The most important factors for physical HRQoL were (importance score) physical activity (40), employment (36), pain (33), sleep (33), and sense of control (26). The most important factors for mental HRQoL were sense of control (18), physical activity (12), depression (12), pain (6), and employment (5).ConclusionsThe factors important for HRQoL identified by this study are likely to be amenable to interventions, and our findings can support prioritising interventions. The identified factors need to be a target even before middle-age to lay the foundation for long and happy lives.

Abstract Objective There have been few descriptions of how outpatient cancer care is provided to patients from culturally and linguistically diverse (CALD) communities. As populations who experience disparities in cancer care access and outcomes, deeper understanding is needed to help identify those factors which can shape the receipt of multidisciplinary care in ambulatory settings. This paper reports on data collected and analysed as part of a multicentre characterisation of care in Australian public hospital cancer outpatient clinics (OPCs). Results Analysis of data from our ethnographic study of four OPCs identified three themes: “Identifying CALD patient language-related needs”; “Capacity and resources to meet CALD patient needs”, and “Making it work for CALD communities.” The care team comprises not only clinicians but also families and non-clinical staff; OPCs serve as “touchpoints” facilitating access to a range of therapeutic services. The findings highlight the potential challenges oncology professionals negotiate in providing care to CALD communities and the ways in which clinicians adapt their practices, formulate strategies and use available resources to support care delivery.

Abstract Background NSW has a multicultural population with increasing migration from South East Asia, the Western Pacific and Eastern Mediterranean. Objective To compare cancer stage, treatment (first 12 months) and survival for 12 country of birth (COB) categories recorded on the population-based NSW Cancer Registry. Design Historic cohort study of invasive breast cancers diagnosed in 2003–2016. Patients Data for 48,909 women (18+ ages) analysed using linked cancer registry, hospital inpatient and Medicare and pharmaceutical benefits claims data. Measurement Comparisons by COB using multivariate logistic regression and proportional hazards regression with follow-up of vital status to April 30th, 2020. Results Compared with the Australia-born, women born in China, the Philippines, Vietnam and Lebanon were younger at diagnosis, whereas those from the United Kingdom, Germany, Italy and Greece were older. Women born in China, the Philippines, Vietnam, Greece and Italy lived in less advantaged areas. Adjusted analyses indicated that: (1) stage at diagnosis was less localised for women born in Germany, Greece, Italy and Lebanon; (2) a lower proportion reported comorbidity for those born in China, the Philippines and Vietnam; (3) surgery type varied, with mastectomy more likely for women born in China, the Philippines and Vietnam, and less likely for women born in Italy, Greece and Lebanon; (4) radiotherapy was more likely where breast conserving surgery was more common (Greece, Italy, and Lebanon) and the United Kingdom; and (5) systemic drug therapy was less common for women born in China and Germany. Five-year survival in NSW was high by international standards and increasing. Adjusted analyses indicate that, compared with the Australian born, survival from death from cancer at 5 years from diagnosis was higher for women born in China, the Philippines, Vietnam, Italy, the United Kingdom and Greece. Conclusions There is diversity by COB of stage, treatment and survival. Reasons for survival differences may include cultural factors and healthier migrant populations with lower comorbidity, and potentially, less complete death recording in Australia if some women return to their birth countries for treatment and end-of-life care. More research is needed to explore the cultural and clinical factors that health services need to accommodate.

Abstract Background The adoption of Patient Reported Outcome Measures (PROMs) in cancer care has been widely advocated, but little is known about the evidence for the implementation of PROMs in practice. Qualitative research captures the perspectives of health professionals as end-users of PROMs and can be used to inform adoption efforts. This paper presents a systematic review and synthesis of qualitative research conducted to address the question: What are the attitudes of health professionals towards PROMs in oncology, including any barriers and facilitators to the adoption of PROMS, reported in qualitative evidence? Methods Systematic searches of qualitative evidence were undertaken in four databases and reviewed using the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Studies published in English between 1998 and 2018, which reported qualitative findings about the attitudes of health professionals working in oncology towards PROMs were eligible. Studies were assessed using the Critical Appraisal Skills Programme’s Qualitative Research Checklist. A sentiment analysis was conducted on primary text to examine the polarity (neutral, positive or negative) of health professionals’ views of PROMs. Qualitative meta-synthesis was conducted using a constant comparative analysis. Results From 1227 articles after duplicates were removed, with 1014 excluded against the screening criteria, 213 full text articles remained and were assessed; 34 studies met the inclusion criteria and were included. The majority of studies were of good quality. Sentiment analysis on primary text demonstrated an overall positive polarity from the expressed opinions of health professionals. The meta-synthesis showed health professionals’ attitudes in four domains: identifying patient issues and needs using PROMs; managing and addressing patient issues; the care experience; and the integration of PROMs into clinical practice. Conclusions From the accounts of health professionals, the fit of PROMs with existing practice, how PROMs are valued, capacity to respond to PROMs and the supports in place, formed the key factors which may impede or promote adoption of PROMs in routine practice. To assist policy-makers and services involved in implementing these initiatives, further evidence is required about the relationship between PROMs data collection and corresponding clinical actions. Trial registration International Prospective Register of Systematic Reviews (PROSPERO) CRD42019119447, 6th March, 2019.

Introduction Regular, low-dose, sustained-release morphine is effective in reducing chronic breathlessness in people with advanced disease, particularly in patients with chronic obstructive pulmonary disease (COPD). Despite experiencing a reduction in breathlessness, some patients choose not to continue long-term treatment.Aim This study aimed to explore patients’ and caregivers’ experiences with regular, low-dose, sustained-release morphine for chronic breathlessness associated with COPD.Methods A qualitative study embedded in a randomised controlled trial (RCT) of regular low-dose, sustained-release morphine for chronic breathlessness for people with COPD and modified Medical Research Council breathlessness scale 3–4. After completing the RCT or withdrawing, patients and their caregivers were invited to participate in interviews in their homes focused on their experiences with the trial medication while still blinded to the arm to which they had been allocated. Data analysis used a constant comparative method informed by the principles of grounded theory.Results Thirteen patients and nine caregivers participated. Four themes were identified: (1) Receptivity and knowledge; (2) Function as a priority; (3) Harmful and helpful side effects; and (4) Therapy-centred aspects. The concept of ‘net effect’ emerged from the interplay between themes, subthemes and the decision to continue taking sustained-release morphine during the trial and after trial completion.Conclusion Clinicians’ support and preconceived ideas about morphine influence the decision to commence sustained-release morphine. The hope for functional improvement is the great driver influencing positively the decision to take sustained-release morphine in the long term. The degree of symptom reduction, improved function, side-effects’ severity and caregivers’ availability creates a net effect driving patients’ decisions to continue or discontinue the medication.

Introduction Breathlessness is debilitating and increases in prevalence with age, with people progressively reducing their everyday activities to ‘self-manage’ it. This study aimed to evaluate the impact of breathlessness on function in terms of activities that have been reduced or ceased (‘compromised’) in older men.Methods A cross-sectional postal survey of Swedish 73-year-old man in the VAScular and Chronic Obstructive Lung disease study self-reporting on demographics, breathlessness (modified Medical Research Council (mMRC) scale, Dyspnoea-12, Multidimensional Dyspnea Scale) and its duration, anxiety/depression (Hospital Anxiety and Depression Scale), performance status (WHO Performance Status), everyday activities reduced/ceased and exertion.Results 148/828 (17.9%) respondents reported breathlessness (mMRC >2), of whom 51.9% had reduced/ceased activities compared with 9.6% who did not. Physical activity was the most common activity reduced/ceased (48.0%) followed by sexual activity (41.2%) and social activities (37.8%). Of 16.0% of respondents with mMRC 3–4 talking on the phone was affected compared with only 2.9% of respondents with mMRC 2. Worsening breathlessness was associated with increasingly sedentary lifestyles and more limited function, those reporting reduced/ceased activities had an associated increase in reporting anxiety and depression. In adjusted analyses, breathlessness was associated with increased likelihood of activities being ceased overall as well as physical and sexual activities being affected separately.Conclusion Worsening breathlessness was associated with decreasing levels of self-reported physical activity, sexual activity and function. Overall, the study showed that people with persisting breathlessness modify their lifestyle to avoid it by reducing or ceasing a range of activities, seeking to minimise their exposure to the symptom.

Chronic breathlessness, persistent and disabling despite optimal treatment of underlying causes, is a prevalent and frightening symptom and is associated with many emergency presentations and admission to hospital. Breathlessness management techniques used by paramedics may reduce the need for conveyance to hospital. The Breathlessness RElief AT HomE study (BREATHE) aims to explore the feasibility of conducting a definitive cluster randomised controlled trial (cRCT) for people with acute-on-chronic breathlessness who have called an ambulance, to evaluate the effectiveness and cost-effectiveness of a paramedic-administered non-pharmacological breathlessness intervention. The trial is a mixed-methods feasibility cRCT. Eight paramedics will be randomised 1:1 to deliver either the BREATHE intervention in addition to usual care or usual care alone at call-outs for acute-on-chronic breathlessness. Sixty participants will be recruited to provide access to routine data relating to the index call-out with optional follow-up questionnaires at 14 days, 1 month and 6 months. An in-depth interview will be conducted with a subgroup. Feasibility outcomes relating to recruitment, data quality (especially candidate primary outcomes), and intervention acceptability and fidelity will be collected as well as providing data to estimate a sample size for a definitive trial. Yorkshire and The Humber–Sheffield Research Ethics Committee approved the trial protocol (19/YH/0314). The study results will inform progression to, or not, and design of a main trial according to predetermined stop-go criteria. Findings will be disseminated to relevant stakeholders and submitted for publication in a peer-reviewed journal.

Background Despite evidence that opioids might relieve chronic breathlessness, physicians may still be reluctant to prescribe them due to safety concerns. By contrast, benzodiazepine (BDZ) prescribing often seeks to reduce chronic breathlessness despite no evidence of net benefit. Prescribing patterns and indications for these medications in severe interstitial lung disease (ILD) are unknown. Here, our objective was to evaluate the indications, medications and temporal patterns of BDZ and opioid prescriptions in people with oxygen-dependent ILD. Methods This was an observational, population-based, longitudinal study of adults starting long-term oxygen therapy (LTOT) for ILD between 2005 and 2014 in the Swedish National Registry for Respiratory Failure (Swedevox). People dispensed BDZs (n=2000) and opioids (n=2000) from 6 months before start of LTOT throughout follow-up (first of death or study end) were analysed. Results Of 1635 included patients, 651 (39.8%) received BDZs and 710 (43.4%) received opioids during the study period; 373 (22.8%) patients received both. The most frequently prescribed BDZs and opioids were oxazepam (85.6%) and oxycodone (28.7%), respectively. Indications for breathlessness were uncommon for BDZs (1.4%) and opioids (6.4%). During the last year of life, opioid indications for breathlessness increased from 2.5% (12–10 months before death) to 10.2% in the last 3 months of life (p=0.048). Conclusions In oxygen-dependent ILD, opioids are rarely prescribed for breathlessness even in the last months of life, when chronic breathlessness often increases in prevalence and intensity.

Background Breathlessness is a multidimensional symptom prevalent in elderly affecting many aspects of life. We aimed to determine how different dimensions of breathlessness are associated with physical and mental quality of life (QoL) in elderly men.Methods This was a cross-sectional, population-based analysis of 672 men aged 73 years in a Swedish county. Breathlessness was assessed using Dyspnoea-12 (D-12) and Multidimensional Dyspnoea Profile (MDP), and QoL using the Short Form 12 physical and mental scores. Scores were compared as z-scores across scales and analysed using multivariable linear regression, adjusted for smoking, body mass index and the presence of respiratory and cardiovascular disease.Results Worse breathlessness was related to worse physical and mental QoL across all the D-12 and MDP dimension scores. Physical QoL was most strongly associated with perceptional breathlessness scores, D-12 total and physical scores (95% CI −0.45 to −0.30). Mental QoL was more strongly influenced by affective responses, MDP emotional response score (95% CI −0.61 to −0.48). Head-to-head comparison of the instruments confirmed that D-12 total and physical scores most influenced physical QoL, while mental QoL was mostly influenced by the emotional responses captured by the MDP.Conclusion Breathlessness dimensions and QoL measures are associated differently. Physical QoL was most closely associated with sensory and perceptual breathlessness dimensions, while emotional responses were most strongly associated with mental QoL in elderly men. D-12 and MDP contribute complimentary information, where affective and emotional responses may be related to function, deconditioning and QoL.

Introduction Cancer deaths are a major contributor to premature mortality in people with mental health conditions. Some cancers occur more often in people with mental health conditions because of increased risk factors. However, most premature cancer mortality in people with mental health conditions arises from increased cancer case fatality rates due to health care related factors. While there is substantial evidence that a problem exists, further evidence is needed to support effective action and the translation of research findings into better policy, services and care. Objectives and Approach The NSW Mental Health Living Longer program involves population-wide data linkage that combines records from nine NSW data collections. Our collection includes over 120 million records for more than nine million people. This presentation focuses on the use of linked data to develop indicators to support reporting on premature breast and cervical cancer mortality for women living with mental illness. These indicators will be used to identify variation in care, assess areas for targeted intervention, and evaluate the effectiveness of research translation into more effective care. Results This work is ongoing and will be finalised by August 2020. We will use regression techniques to examine predictors of participation in breast and cervical cancer screening for women who use mental health services in NSW. These results will be used to assess geographical variation in risk-adjusted screening participation rates. We will also present methods and results for measuring incidence and stage at presentation, as well as 5 year survival for women who use mental health services in NSW. Conclusion / Implications If cancer survival is a key measure of the effectiveness of healthcare systems, then reduced survival in people with mental health problems reflects less effective health care. Improving screening and treatment services is likely to be the most important strategy for reducing the cancer mortality gap for women with mental illness.

Objective Using linked cancer registry and administrative data to monitor, tumour, node and metastases (TNM) stage and survival from female breast cancer in Australia.Method Analysis of 2000–2014 diagnoses with linked population-based data to investigate: (1) sociodemographic predictors of advanced stage (stages III and IV), using unadjusted and adjusted logistic regression; and (2) sociodemographic factors and stage as predictors of breast cancer survival using competing risk regression.Design Population-based registry cohort.Setting and participants 14 759 South Australian women diagnosed in 2000–2014.Primary and secondary outcome measures Stage and survival.Results At diagnosis, 46% of women were classified as stage I, 39% as stage II, 12% as stage III and 4% as stage IV. After adjusting for sociodemographic factors, advanced stage was more common: (1) for ages

**Background** The International Narcotics Control Board (INCB) has overseen international drug control since 1968 with the dual remit of restricting illicit production and use of controlled substances, whilst enabling access for clinical purposes. Two opioid crises are present under its jurisdiction: i) abuse, dependence and premature mortality in high-income countries; and ii) inadequate supply of opioids for clinical purposes for most of the world represented almost exclusively by low- and middle-income countries. **Methods** Systematic critical analysis using corpus linguistics as a method of document analysis to investigate the regulatory climate promoted by the INCB, through language used regarding opioids in a representative sample of annual Reports, 1968-2018. Instances of key terms (narcotics, opiates, opioids, analgesia) were retrieved, with surrounding text for context. Two systematic coding phases were undertaken by two researchers, adjudicated by a third, to develop themes. We report frequencies per-1000 words of themes and key terms, aggregated and by decade. **Results** Five themes were developed within three domains: abuse and dependency, illegal trade (domain 1: illicit uses); policy, enforcement and context (domain 2: illicit and therapeutic uses), and access for therapeutic use, estimates of need (domain 3: therapeutic uses). For fifty years, the INCB has focussed predominantly upon domain 1: illicit uses, with little attention to domain 3: therapeutic Uses. Decreasing attention is provided to the estimates of annual requirements system, under which global opioid access to opioids is documented as inadequate. **Conclusions** The INCB must consider how improving availability of therapeutic opioids could reduce widespread suffering safely and effectively. Urgent international and national action is required to improve methods of accurately estimating population-level needs for opioids for all therapeutic requirements. Fears of illicit production or use should not limit the prospects of accessing appropriate therapeutic opioids where the majority of the world, today, have no realistic access.

Abstract Background Chronic obstructive pulmonary disease (COPD) guidelines recommend early access to palliative care together with optimal, disease-directed therapy for people with advanced disease, however, this occurs infrequently. This study explored the approaches of respiratory and palliative medicine specialists to palliative care and advance care planning (ACP) in advanced COPD. Methods An online survey was emailed to all specialists and trainees in respiratory medicine in Australia and New Zealand (ANZ), and to all palliative medicine specialists and trainees in ANZ and the United Kingdom. Results Five hundred seventy-seven (33.1%) responses were received, with 440 (25.2%) complete questionnaires included from 177 respiratory and 263 palliative medicine doctors. Most respiratory doctors (140, 80.9%) were very or quite comfortable providing a palliative approach themselves to people with COPD. 113 (63.8%) respiratory doctors recommended referring people with advanced COPD to specialist palliative care, mainly for access to: psychosocial and spiritual care (105, 59.3%), carer support (104, 58.5%), and end-of-life care (94, 53.1%). 432 (98.2%) participants recommended initiating ACP discussions. Palliative medicine doctors were more likely to recommend discussing: what palliative care is (p

Abstract Background Nausea/vomiting (N/V) not related to anti-cancer treatment is common in patients with advanced cancer. The standard approach to management is to define a dominant cause, and treat with an antiemetic selected through pathophysiologic knowledge of emetic pathways. High rates of N/V control have been reported using both etiology-based guideline-driven antiemetic regimens and an empiric approach using single agents in uncontrolled studies. These different approaches had never been formally compared. Methods This randomized, prospective, open label, dose-escalating study used readily available antiemetics in accordance with etiology-based guidelines or single agent therapy with haloperidol. Participants had a baseline average nausea score of ≥3/10. Response was defined as a ≥ 2/10 point reduction on a numerical rating scale of average nausea score with a final score

Abstract Background Aboriginal and Torres Strait Islander peoples in Australia have been found to have poorer cancer survival than non-Aboriginal people. However, use of conventional relative survival analyses is limited due to a lack of life tables. This cohort study examined whether poorer survival persist after accounting for competing risks of death from other causes and disparities in cancer stage at diagnosis, for all cancers collectively and by cancer site. Methods People diagnosed in 2000–2008 were extracted from the population-based New South Wales Cancer Registry. Aboriginal status was multiply imputed for people with missing information (12.9%). Logistic regression models were used to compute odds ratios (ORs) with 95% confidence intervals (CIs) for ‘advanced stage’ at diagnosis (separately for distant and distant/regional stage). Survival was examined using competing risk regression to compute subhazard ratios (SHRs) with 95%CIs. Results Of the 301,356 cases, 2517 (0.84%) identified as Aboriginal (0.94% after imputation). After adjusting for age, sex, year of diagnosis, socio-economic status, remoteness, and cancer site Aboriginal peoples were more likely to be diagnosed with distant (OR 1.30, 95%CI 1.17–1.44) or distant/regional stage (OR 1.29, 95%CI 1.18–1.40) for all cancers collectively. This applied to cancers of the female breast, uterus, prostate, kidney, others (those not included in other categories) and cervix (when analyses were restricted to cases with known stages/known Aboriginal status). Aboriginal peoples had a higher hazard of death than non-Aboriginal people after accounting for competing risks from other causes of death, socio-demographic factors, stage and cancer site (SHR 1.40, 95%CI 1.31–1.50 for all cancers collectively). Consistent results applied to colorectal, lung, breast, prostate and other cancers. Conclusions Aboriginal peoples with cancer have an elevated hazard of cancer death compared with non-Aboriginal people, after accounting for more advanced stage and competing causes of death. Further research is needed to determine reasons, including any contribution of co-morbidity, lifestyle factors and differentials in service access to help explain disparities.

Abstract Objective: When using area‐level disadvantage measures, size of geographic unit can have major effects on recorded socioeconomic cancer disparities. This study examined the extent of changes in recorded socioeconomic inequalities in cancer survival and distant stage when the measure of socioeconomic disadvantage was based on smaller Census Collection Districts (CDs) instead of Statistical Local Areas (SLAs). Methods: Population‐based New South Wales Cancer Registry data were used to identify cases diagnosed with primary invasive cancer in 2000–2008 (n=264,236). Logistic regression and competing risk regression modelling were performed to examine socioeconomic differences in odds of distant stage and hazard of cancer death for all sites combined and separately for breast, prostate, colorectal and lung cancers. Results: For all sites collectively, associations between socioeconomic disadvantage and cancer survival and distant stage were stronger when the CD‐based socioeconomic disadvantage measure was used compared with the SLA‐based measure. The CD‐based measure showed a more consistent socioeconomic gradient with a linear upward trend of risk of cancer death/distant stage with increasing socioeconomic disadvantage. Site‐specific analyses provided similar findings for the risk of death but less consistent results for the likelihood of distant stage. Conclusions: The use of socioeconomic disadvantage measure based on the smallest available spatial unit should be encouraged in the future. Implications for public health: Disadvantage measures based on small spatial units can more accurately identify socioeconomic cancer disparities to inform priority settings in service planning.

Purpose Health systems must move from recognition to action if we are to address premature mortality in people with mental illness. Population data registers are an essential tool for planning and monitoring improvement efforts. The Mental Health Living Longer (MHLL) programme establishes a population-wide data linkage to support research translation and service reform in New South Wales (NSW), Australia.Participants A total of 8.6 million people who have had contact with NSW public and private health services between July 2001 and June 2018 are currently included in the study. Data include more than 120 million linked records from NSW data collections covering public and private hospital care, emergency departments, ambulance, community mental health services, cancer notifications and care, and death registrations. Linkage is occurring with population-wide breast and cervical cancer screening programmes. Data will be updated 6 monthly.Findings to date The cohort includes 970 145 people who have received mental healthcare: 79% have received community mental healthcare, 35% a general hospital admission with a primary mental health diagnosis and 25% have received specialist mental health inpatient care. The most frequent pattern of care is receipt of community mental healthcare only (50%). The median age of the mental health cohort is 34 years, and three-quarters are younger than 53 years. Eleven per cent of the mental health cohort had died during the observation period. Their median age at death was 69 years, which was younger than the median age at death for people accessing other health services.Future plans The MHLL programme will examine (i) all-cause mortality, (ii) suicide, (iii) cancer mortality and (iv) medical mortality. Within each theme, the programme will quantify the problem in mental health service users compared with the NSW population, describe the people most affected, describe the care received, identify predictors of premature mortality, and identify variation and opportunities for change.

Background Breathlessness, the subjective sensation of breathing discomfort, is common and appears in the daily life of people with cardiorespiratory diseases. Physicians often rely on patient’s history based on symptom recall. The relation between recalled and experienced breathlessness is still poorly understood. This paper presents the protocol for a study primarily aimed at evaluating the relationship between experienced breathlessness and (1) recalled breathlessness and (2) predicted future breathlessness.Methods A mobile phone application will be used to collect data during daily life. Medically stable participants, ≥18 years of age with mean daily breathlessness of Numerical Rating Scale (NRS) 3/10 and able to use a mobile phone with internet will rate their breathlessness intensity on a 0–10 NRS prompted the user several times daily for 1 week. Participants will recall their breathlessness each day and week. Multivariable random effects regression models will be used for statistical analyses.Results Results of the study will be submitted for publication in peer-reviewed journals and presented at relevant conferences.Discussion This protocol describes a study aimed at investigating previously unknown areas of the experience and recall of breathlessness using a new method of data collection.Registration details Prospectively registered with ClinicalTrials.gov (Nr: NCT03468205).Ethics and dissemination The study has received ethical approval from the Regional Ethical Review Board Lund (DNr 2017/149). After a general study information including that participation is entirely voluntary, participants will answer the eligibility criteria and be asked to consent to participate before entering the study questions. Written informed consent to participate will be obtained for participants in the clinical sub-cohort. Participation can be discontinued at the discretion of the participant in which case no further data will be collected.

Neuropathic pain (NP) affects approximately 30% of patients with advanced cancer. The prevalence of neuropathic pain related to peripheral neuropathy (NP-RPN) in these patients is not known. The aim of the study was to evaluate NP-RPN prevalence in hospice patients and to find out whether the absence of this pain is sufficient to rule out peripheral neuropathy. The study included a total of 76 patients with advanced cancer who were cared for at inpatient hospices. All patients were asked about shooting or burning pain (of the feet and hands), were examined systematically for sensory deficits and had a nerve conduction study performed. NP-RPN was found in 29% of the patients. Electrophysiologically-diagnosed peripheral neuropathy was found in 79% of patients, and the diagnostic electrophysiological criteria for neuropathy were met by one half of the patients without NP-RPN. The severity of NP-RPN was correlated with the clinically assessed severity of sensory neuropathy and the Karnofsky score, but was not correlated with the intensity of the clinical signs of motor neuropathy. The presence of NP-RPN did not reflect greater prevalence of motor and sensory abnormalities in neurological and electrophysiological examinations. The absence of NP-RPN did not rule out polyneuropathy in hospice patients.

Abstract Background Lung cancer is the leading cause of cancer death in Australia. There is potential that health promotion about the risks and warning signs of lung cancer could be used to reduce delays in symptom presentation when symptoms are first detected. This study investigated knowledge, attitudes and beliefs which might impact help-seeking behaviour and could provide insight into possible public health interventions in New South Wales (NSW). Methods A convergent mixed method study design was used wherein data from 16 qualitative focus groups of residents (40+ years), purposefully recruited and stratified by smoking status, age and geography (metropolitan/regional), were compared with a CATI administered population-wide telephone survey (n = 1,000) using the Cancer Research UK cancer awareness measure (LungCAM). Qualitative findings were analysed thematically using NVIVO. Logistic regression analysis was used to investigate predictors of symptom knowledge in STATA. Findings were integrated using triangulation techniques. Results Across focus groups, haemoptysis was the only symptom creating a sense of medical urgency. Life experiences evoked a ‘wait and see’ attitude to any health deterioration. Perceived risk was low amongst those at risk with current smokers preferring to deny their risk while former smokers were generally unaware of any ongoing risk. The quantitative sample consisted of females (62 %), 40–65 years (53 %), low SES (53 %), former (46 %) and current smokers (14 %). In quantitative findings, haemoptysis and dyspnoea were the most recognised symptoms across the sample population. Age (

Objective: To use linked NSW Cancer Registry and hospital lung cancer (LC) data for raising discussion points on how to improve outcomes. Design: Historical cohort – cases diagnosed in 2003-2007. Setting: New South Wales, Australia Outcome Measures: Relative odds (OR) of localised disease and resection of non-small cases (NSCLC) using multiple logistic regression. Comparisons of risk of NSCLC death using competing risk regression. Findings: (1) Older patients have fewer resections of localised NSCLC [adjusted OR 95% CLs; 80+Vs

BACKGROUND:Family caregivers provide significant care at the end of life. We aimed to describe caregiver characteristics, and of those unwilling to repeat this role under the same circumstances. METHODS:Observational study of adults in private households (Health Survey for England [HSE]). Caregiving questions included: whether someone close to them died within past 5 years; relationship to the deceased; provision, intensity and duration of care; supportive/palliative care services used; willingness to care again; able to carry on with life. Comparison between those willing to care again or not used univariable analyses and an exploratory multiple logistic regression. A descriptive comparison with Health Omnibus Survey (Australia) data was conducted. FINDINGS:HSE response was 64%. 2167/8861 (25%) respondents had someone close to them die in the previous 5 years. Some level of personal care was provided by 645/8861 (7.3%). 57/632 (9%) former caregivers would be unwilling to provide care again irrespective of time since the death, duration of care, education and income. Younger age (≤65; odds ratio [OR] 2.79; 95% CI 136, 5.74) and use of palliative care services (odds ratio: 1.95, 95% CI: 1.09, 3.48) showed greater willingness to provide care again. Apart from use of palliative care services, findings were remarkably similar to the Australian data. CONCLUSIONS:A significant group of caregivers would be unwilling to provide care again. Older people and those who had not used palliative care services were more likely to be unwilling to care again. Barriers preventing access for disadvantaged groups need to be overcome.

IntroductionComparing multiple, diverse outcomes with cost-effectiveness analysis (CEA) is important, yet challenging in areas like palliative care where domains are unamenable to integration with survival. Generic multi-attribute utility values exclude important domains and non-health outcomes, while partial analyses-where outcomes are considered separately, with their joint relationship under uncertainty ignored-lead to incorrect inference regarding preferred strategies.ObjectiveThe objective of this paper is to consider whether such decision making can be better informed with alternative presentation and summary measures, extending methods previously shown to have advantages in multiple strategy comparison.MethodsMultiple outcomes CEA of a home-based palliative care model (PEACH) relative to usual care is undertaken in cost disutility (CDU) space and compared with analysis on the cost-effectiveness plane. Summary measures developed for comparing strategies across potential threshold values for multiple outcomes include: expected net loss (ENL) planes quantifying differences in expected net benefit; the ENL contour identifying preferred strategies minimising ENL and their expected value of perfect information; and cost-effectiveness acceptability planes showing probability of strategies minimising ENL.ResultsConventional analysis suggests PEACH is cost-effective when the threshold value per additional day at home (𝕜1) exceeds $1,068 or dominated by usual care when only the proportion of home deaths is considered. In contrast, neither alternative dominate in CDU space where cost and outcomes are jointly considered, with the optimal strategy depending on threshold values. For example, PEACH minimises ENL when 𝕜1=$2,000 and 𝕜2=$2,000 (threshold value for dying at home), with a 51.6% chance of PEACH being cost-effective.ConclusionComparison in CDU space and associated summary measures have distinct advantages to multiple domain comparisons, aiding transparent and robust joint comparison of costs and multiple effects under uncertainty across potential threshold values for effect, better informing net benefit assessment and related reimbursement and research decisions.

IntroductionThe ability of patients to finalise their affairs at the end of life is an often neglected aspect of quality of life (QOL) measurement in palliative care effectiveness research despite compelling evidence of the high value patients place on this domain.ObjectiveThis paper describes the preliminary development and evaluation of a new, single-item, end-of-life patient-reported outcome measure (EOLPRO) designed to capture changes in the ability of patients to finalise their affairs at the end of life.MethodsCognitive interviews with purposively sampled Australian palliative care patients (N = 9) were analysed thematically to explore content validity. Simultaneously, secondary analysis of data from a randomised controlled trial comparing ketamine and placebo for the management of cancer pain (N = 185) evaluated: construct validity; test-retest reliability; and responsiveness.ResultsPreliminary findings suggest patients interpret the new measure consistently. The EOLPRO captures the ability to complete physical tasks and finalise practical matters although it is unclear whether emotional tasks or resolution of relationship issues are considered. Personal and financial affairs should be separated to allow for differences in ability for these two types of affairs. The significant correlation between performance status and EOLPRO scores (r = 0.41, pConclusionBased on the preliminary findings, the EOLPRO should be separated into 'personal' and 'financial' affairs with further testing suggested, particularly to verify coverage and responsiveness. Initial evaluation suggests that the single-item EOLPRO is a useful addition to QOL outcome measurement in palliative care effectiveness research because common palliative care specific QOL questionnaires do not include or explicitly capture this domain.