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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.

BACKGROUND: Breathlessness is a troublesome and prevalent symptom in the population, but knowledge of related factors is scarce. The aim of this study was to identify the factors most strongly associated with breathlessness in the general population and to describe the shapes of the associations between the main factors and breathlessness. METHODS: A cross-sectional analysis was carried out of the multicentre population-based Swedish CArdioPulmonary bioImage Study (SCAPIS) of adults aged 50 to 64 years. Breathlessness was defined as a modified Medical Research Council breathlessness rating ≥2. The machine learning algorithm extreme gradient boosting (XGBoost) was used to classify participants as either breathless or nonbreathless using 449 factors, including physiological measurements, blood samples, computed tomography cardiac and lung measurements, lifestyle, health conditions and socioeconomics. The strength of the associations between the factors and breathlessness were measured by SHapley Additive exPlanations (SHAP), with higher scores reflecting stronger associations. RESULTS: A total of 28 730 participants (52% women) were included in the study. The strongest associated factors for breathlessness were (in order of magnitude): body mass index ( SHAP score 0.39), forced expiratory volume in 1 s (0.32), physical activity measured by accelerometery (0.27), sleep apnoea (0.22), diffusing lung capacity for carbon monoxide (0.21), self-reported physical activity (0.17), chest pain when hurrying (0.17), high-sensitivity C-reactive protein (0.17), recent weight change (0.14) and cough (0.13). CONCLUSION: This large population-based study of men and women aged 50-64 years identified the main factors related to breathlessness that may be prevented or amenable to public health interventions.

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 <0.001; each domain p <0.001). The most compromised domains were Mobility and Participation.In the last 30 days, people with severe breathlessness (mMRC 3-4): experienced disability (20 days); reduced activities/work (10 days); and completely forwent activities (another 5 days). CONCLUSIONS: Disability should be in the definition of persistent breathlessness as it is systematically associated with long-term breathlessness limiting exertion in a grade-dependent, multidimensional manner. Disability should be assessed in people with long-term breathlessness to optimise their social well-being and health.

Contains fulltext : 291053.pdf (Publisher’s version ) (Open Access), PURPOSE: Oxygen is commonly prescribed to patients with severe COPD. However, little is known about the perspectives COPD patients, who do not yet use oxygen, have on this treatment. PATIENTS AND METHODS: A total of 14 oxygen-naïve patients with COPD Gold stages 3-4 and a high symptom burden participated in semi-structured interviews, in which their beliefs and expectations regarding oxygen therapy were explored. We used conventional content analysis to process our qualitative data. RESULTS: Four main themes were identified: seeking information, expected impact on quality of life, expected social impact and stigma, and last phase of life. CONCLUSION: The message that home oxygen should be started, was regarded as bad news by most participants. The rationale behind the therapy and the way it is delivered were unknown to most participants. Some participants anticipated smoking-related stigma and social isolation. Misconceptions such as tank explosions, becoming housebound, full dependency on oxygen and an imminent death were common amongst interviewees. Clinicians should be aware of these fears and assumptions when communicating with patients on this subject.

Healthcare innovations often represent important improvements in population welfare, but at what cost, and to whom? Health technology assessment (HTA) is a multidisciplinary process to inform resource allocation. HTA is conventionally anchored on health maximization as the only relevant output of health services. If we accept the proposition that health technologies can generate value outside the healthcare system, resource allocation decisions could be suboptimal from a societal perspective. Incorporating "broader value" in HTA as derived from social values and patient experience could provide a richer evaluative space for informing resource allocation decisions. This article considers how HTA is practiced and what its current context implies for adopting "broader value" to evaluating health technologies. Methodological challenges are highlighted, as is a future research agenda. Ireland serves as an example of a healthcare system that both has an explicit role for HTA and is evolving under a current program of reform to offer universal, single-tier access to public services. There are various ways in which HTA processes could move beyond health, including considering the processes of care delivery and/or expanding the evaluative space to some broader concept of well-being. Methods to facilitate the latter exist, but their adaptation to HTA is still emerging. We recommend a multi-stakeholder working group to develop and advance an international agenda for HTA that captures welfare/benefit beyond health.

BACKGROUND: Breathlessness and fatigue are common symptoms in older people. We aimed to evaluate how different breathlessness dimensions (overall intensity, unpleasantness, sensory descriptors, emotional responses) were associated with fatigue in elderly men. METHODS: This was a cross-sectional analysis of the population-based VAScular disease and Chronic Obstructive Lung Disease (VASCOL) study of 73-year old men. Breathlessness dimensions were assessed using the Dyspnoea-12 (D-12), Multidimensional Dyspnoea Profile (MDP), and the modified Medical Research Council (mMRC) scale. Fatigue was assessed using the Functional Assessment of Chronic Illness Therapy-Fatigue (FACIT-F) questionnaire. Clinically relevant fatigue was defined as FACIT-F≤ 30 units. Scores were compared standardized as z-scores and analysed using linear regression, adjusted for body mass index, smoking, depression, cancer, sleep apnoea, prior cardiac surgery, respiratory and cardiovascular disease. RESULTS: Of 677 participants, 11.7% had clinically relevant fatigue. Higher breathlessness scores were associated with having worse fatigue; for D-12 total, -0.35 ([95% CI] -0.41 to -0.30) and for MDP A1, -0.24 (-0.30 to -0.18). Associations were similar across all the evaluated breathlessness dimensions even when adjusting for the potential confounders. CONCLUSION: Breathlessness assessed using D-12 and MDP was associated with worse fatigue in elderly men, similarly across different breathlessness dimensions.

BACKGROUND: Measuring health related quality-of-life (HRQoL) of the general population is essential to establish a reference for health outcome evaluations. This study sought to establish EQ-5D-5L population norms in Australia and to investigate the heterogeneity of HRQoL between sociodemographic variables. METHODS: A cross-sectional study comprising of a representative sample of Australia's general population (n = 9958) aged 18 or older. Recruitment quotas were set for the Australian census population by age, sex, state/territory of residence and rurality. Participants were recruited by Qualtrics through its database of over 800,000 registered panel members and asked to value their own state of health using the EQ-5D-5L domains and the EuroQol-Visual Analogue Scale (EQ-VAS). An Australian value set developed using Discreet Choice Experiment was used to calculate utility scores. RESULTS: The estimated mean EQ-5D-5L index for Australia's general population was 0.86 (standard deviation [SD] 0.19), and the EQ-VAS score was estimated as 73.2 (SD 21.7). 23.9% of the study population reported being in the best health state (11,111). Younger people, current smokers, people who are unemployed and people with more financial stress reported a lower EQ-5D-5L index score (p < 0.001). Residents in the major cities, inner regional and outer regional Australia reported higher health utility scores than those residing in remote and very remote Australia. CONCLUSIONS: This is the first Australian study to apply the EQ-5D-5L in a nationally representative sample. The EQ-5D-5L Australian population norms obtained can be used as reference scores for future population health evaluations and comparisons. The findings facilitate a national reference for clinical, economic, and policy decision-making processes and provide a fuller understanding of the Australian population's HRQoL.

INTRODUCTION: Health-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. METHODS: This 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. RESULTS: Men 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). CONCLUSIONS: The 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.

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.

BACKGROUND: Vaccine-preventable conditions cause preventable illness and may increase mortality in people living with mental illness. We examined how risks of hospitalisation for a wide range of vaccine-preventable conditions varied by age and sex among mental health (MH) service users. METHODS: Linked population data from New South Wales (NSW), Australia were used to identify vaccine-preventable hospitalisations (VPH) for 19 conditions from 2015 to 2020. Adult MH service users (n = 418 915) were compared to other NSW residents using incidence rates standardised for age, sex and socioeconomic status. Secondary analyses examined admissions for COVID-19 to September 2021. RESULTS: We identified 94 180 VPH of which 41% were influenza, 33% hepatitis B and 10% herpes zoster. MH service users had more VPH admissions [adjusted incidence rate ratio (aIRR) 3.2, 95% CI 3.1-3.3]. Relative risks were highest for hepatitis (aIRR 4.4, 95% CI 4.3-4.6), but elevated for all conditions including COVID-19 (aIRR 2.0, 95% CI 1.9-2.2). MH service users had a mean age of 9 years younger than other NSW residents at first VPH admission, with the largest age gap for vaccine-preventable pneumonias (11-13 years younger). The highest relative risk of VPH was among MH service users aged 45-65. CONCLUSIONS: MH service users have increased risk of hospitalisation for many vaccine-preventable conditions. This may be due to reduced vaccination rates, more severe illness requiring hospitalisation, greater exposure to infectious conditions or other factors. People living with mental illness should be prioritised in vaccination strategies.

Abstract Introduction This study aimed to explore the relationship between breathlessness (severity and chronicity) and poor sleep quality. Methods Analysis of an Australia-wide, online cross-sectional survey carried out between 12 July - 2 August 2021. Community-dwelling adults were recruited from a web-based survey panel, with recruitment based on age, gender, and state of residence quotas to match the Australian 2016 census population data. Participants self-reported breathlessness using the modified Medical Research Council (mMRC) scale, as well as their perceived sleep quality and other demographic and health measures. Results Sleep quality was available for 9,877 responders (52% females, mean age 46, SD=19 years, BMI 27 SD=7 kg/m2). Sleep quality in the previous month was reported as “very good”, “fairly good”, “fairly bad” and “very bad” by 16, 49, 25%, and 10% of participants respectively. Breathlessness (mMRC 1–4), chronic breathlessness (mMRC 1–4 for longer than 3 months) and severe breathlessness (mMRC 2–4) were 42, 29 and 11% respectively. Respondents with perceived poor sleep quality were more likely to be breathless, younger, with a higher BMI, and higher likelihood of identifying as female. All measures of breathlessness were associated with increased odds of poor sleep quality [adjusted models with gender, age and BMI, OR (95% confidence interval): 2.6 (2.4 to 2.9), 3.1 (2.8 to 3.5) and 3.4 (2.9 to 3.9) for breathlessness, chronic and severe breathlessness respectively]. There were no significant interactions between any breathlessness measure and age. Discussion There is a strong association between breathlessness and perceived poor sleep quality.

This expert group consensus statement emphasises the need for standardising the definition of progressive fibrosing interstitial lung diseases (F-ILDs), with an accurate initial diagnosis being of paramount importance in ensuring appropriate initial management. Equally, case-by-case decisions on monitoring and management are essential, given the varying presentations of F-ILDs and the varying rates of progression. The value of diagnostic tests in risk stratification at presentation and, separately, the importance of a logical monitoring strategy, tailored to manage the risk of progression, are also stressed. The term "progressive pulmonary fibrosis" (PPF) exactly describes the entity that clinicians often face in practice. The importance of using antifibrotic therapy early in PPF (once initial management has failed to prevent progression) is increasingly supported by evidence. Artificial intelligence software for high-resolution computed tomography analysis, although an exciting tool for the future, awaits validation. Guidance is provided on pulmonary rehabilitation, oxygen and the use of non-invasive ventilation focused specifically on the needs of ILD patients with progressive disease. PPF should be differentiated from acute deterioration due to drug-induced lung toxicity or other forms of acute exacerbations. Referral criteria for a lung transplant are discussed and applied to patient needs in severe diseases where transplantation is not realistic, either due to access limitations or transplantation contraindications. In conclusion, expert group consensus guidance is provided on the diagnosis, treatment and monitoring of F-ILDs with specific focus on the recognition of PPF and the management of pulmonary fibrosis progressing despite initial management.

BACKGROUND: Women living with mental health conditions may not have shared in improvements in breast cancer screening and care. No studies have directly examined the link between reduced screening participation and breast cancer spread in women using mental health (MH) services. METHODS: Population-wide linkage of a population cancer register, BreastScreen register, and mental health service data set in women aged 50 to 74 years in New South Wales, Australia, from 2008 to 2017. Incident invasive breast cancers were identified. Predictors of degree of spread (local, regional, metastatic) at diagnosis were examined using partial proportional odds regression, adjusting for age, socioeconomic status, rurality, and patterns of screening participation. RESULTS: A total of 29 966 incident cancers were identified and included 686 (2.4%) in women with MH service before cancer diagnoses. More than half of MH service users had regional or metastatic spread at diagnosis (adjusted odds ratio, 1.63; 95% CI, 1.41-1.89). MH service users had lower screening participation; however, advanced cancer was more common even when adjusting for screening status (adjusted odds ratio, 1.53; 95% CI, 1.32-1.77). Advanced cancer was more common in women with severe or persistent MH conditions. CONCLUSIONS: Low screening participation rates explain only small part of the risk of more advanced breast cancer in women who use MH services. More study is needed to understand possible mechanisms contributing to more advanced breast cancer in women living with MH conditions. Health systems need strategies to ensure that women living with MH conditions enjoy population gains in breast cancer outcomes.

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 < 0.0001), increased BMI (p < 0.0001), increased levels of pain/discomfort and lower physical health-related quality of life. Hypertension, hypercholesterolemia, and diabetes were not significantly associated with the spNES group or the "other ED" group which included participants with AN, BED, BN. CONCLUSIONS: Several physical health problems were found to be significantly associated with the spNES group including sleep problems, increased BMI, increased levels of pain and lower self-reported physical health-related quality of life. Consequently, fut

INTRODUCTION: Dying 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. METHODS: A 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. RESULTS: Over 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). CONCLUSION: Population-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 pa

INTRODUCTION: Prescriber behaviour is important for understanding opioid use patterns. We described variations in practitioner-level opioid prescribing in New South Wales, Australia (2013-2018). METHODS: We quantified opioid prescribing patterns among medical practitioners using population-level dispensing claims data, and used partitioning around medoids to identify clusters of practitioners who prescribe opioids based on prescribing patterns and patient characteristics identified from linked dispensing claims, hospitalisations and mortality data. RESULTS: The number of opioid prescribers ranged from 20,179 in 2013 to 23,408 in 2018. The top 1% of practitioners prescribed 15% of all oral morphine equivalent (OME) milligrams dispensed annually, with a median of 1382 OME grams (interquartile range [IQR], 1234-1654) per practitioner; the bottom 50% prescribed 1% of OMEs dispensed, with a median of 0.9 OME grams (IQR 0.2-2.6). Based on 63.6% of practitioners with ≥10 patients filling opioid prescriptions in 2018, we identified four distinct practitioner clusters. The largest cluster prescribed multiple analgesic medicines for older patients (23.7% of practitioners) accounted for 76.7% of all OMEs dispensed and comprised 93.0% of the top 1% of practitioners by opioid volume dispensed. The cluster prescribing analgesics for younger patients with high rates of surgery (18.7% of practitioners) prescribed only 1.6% of OMEs. The remaining two clusters comprised 21.2% of prescribers and 20.9% of OMEs dispensed. DISCUSSION AND CONCLUSION: We observed substantial variation in opioid prescribing among practitioners, clustered around four general patterns. We did not assess appropriateness but some prescribing patterns are concerning. Our findings provide insights for targeted interventions to curb potentially harmful practices.

PURPOSE: Older age, risks from pre-existing health conditions and socio-economic disadvantage are negatively related to the prospects of an early-stage cancer diagnosis. With older Aboriginal Australians having an elevated prevalence of these underlying factors, this study examines the potential for the mitigating effects of more frequent contact with general practitioners (GPs) in ensuring local-stage at diagnosis. METHODS: We compared the odds of local vs. more advanced stage at diagnosis of solid tumours according to GP contact, using linked registry and administrative data. Results were compared between Aboriginal (n = 4,084) and non-Aboriginal (n = 249,037) people aged 50 + years in New South Wales with a first diagnosis of cancer in 2003-2016. RESULTS: Younger age, male sex, having less area-based socio-economic disadvantage, and fewer comorbid conditions in the 12 months before diagnosis (0-2 vs. 3 +), were associated with local-stage in fully-adjusted structural models. The odds of local-stage with more frequent GP contact (14 + contacts per annum) also differed by Aboriginal status, with a higher adjusted odds ratio (aOR) of local-stage for frequent GP contact among Aboriginal people (aOR = 1.29; 95% CI 1.11-1.49) but not among non-Aboriginal people (aOR = 0.97; 95% CI 0.95-0.99). CONCLUSION: Older Aboriginal Australians diagnosed with cancer experience more comorbid conditions and more socioeconomic disadvantage than other Australians, which are negatively related to diagnosis at a local-cancer stage. More frequent GP contact may act to partly offset this among the Aboriginal population of NSW.

PURPOSE: Population screening programs have contributed to reduced breast cancer mortality, but disadvantaged or vulnerable groups may not have shared these improvements. In North American and European studies, women living with mental health conditions have reduced breast screening rates. There are no current Australasian data to support health system planning and improvement strategies. METHODS: The New South Wales (NSW) BreastScreen program offers free screening to NSW women aged 50-74. We compared 2-year breast screening rates for mental health service users (n = 33,951) and other NSW women (n = 1,051,495) in this target age range, after standardisation for age, socioeconomic status and region of residence. Mental health service contacts were identified through linkage to hospital and community mental health data. RESULTS: Only 30.3% of mental health service users participated in breast screening, compared with 52.7% of other NSW women (crude incidence rate ratio 0.57, 95% CI 0.56-0.59). Standardisation for age, socioeconomic disadvantage or rural residence did not alter this screening gap. Around 7000 fewer women received screening than would be expected from comparable population rates. Screening gaps were largest in women over 60 and in socioeconomically advantaged areas. Women with severe or persistent mental illness had slightly higher screening rates than other mental health service users. CONCLUSIONS: Low breast cancer screening participation rates for NSW mental health service users suggest significant risk of later detection, possibly leading to more extensive treatment and premature mortality. Focussed strategies are needed to support greater breast screening participation for NSW women who use mental health services.

Objective. To investigate age differences in treatment and survival from acute lymphoblastic (ALL) and acute myeloid leukemia (AML). Methods. 1053 ALL/566 AML patients diagnosed in 2003-2015 on the New South Wales Cancer Registry were included. Treatment within 12 months from diagnosis was assessed using linked registry, hospital, and health-insurance data. Differences by age at diagnosis in treatment and survival were investigated using socio-demographically adjusted regression analyses, with adolescents and young adults (AYA, 15-24 years) as the reference category. Results. Children were less likely than AYA to start ALL treatment >3 days from diagnosis (adjusted odds ratio (aOR 0.39, 95% CI 0.27-0.57)) and to have multiple treatment types (aOR 0.22, 95% CI 0.14-0.34). For AML, aOR of treatment start >3 days was 0.16 (95% CI 0.09-0.29) for children compared with AYA, with no age differences in treatment types. Five-year disease-specific survival for ALL was 84%. Children were less likely than AYA to die from ALL (adjusted subhazard ratio (aSHR 0.32, 95% CI 0.22-0.50)). For AML, the corresponding survival was 73% without an age difference. Children having multiple treatment types for ALL had an increased risk of mortality at aSHR 2.67 (95% CI 1.53-4.67), but not adults at 1.26 (95% CI 0.67-2.47) (interaction p = 0.017). Time from diagnosis to initial treatment start and initial treatment type were not associated with mortality outcomes after adjusting for socio-demographic variables. Conclusion. Children with ALL had better survival. ALL Mortality were negatively associated with multiple treatment types.

INTRODUCTION: Pregnancy-associated gynecological cancer (PAGC) refers to cancers of the ovary, uterus, fallopian tube, cervix, vagina, and vulva diagnosed during pregnancy or within 12 months postpartum. We aimed to describe the incidence of, and perinatal outcomes associated with, invasive pregnancy-associated gynecological cancer. MATERIAL AND METHODS: We conducted a population-based historical cohort study using linked data from New South Wales, Australia. We included all women who gave birth between 1994 and 2013, with a follow-up period extending to September 30, 2018. Three groups were analyzed: a gestational PAGC group (women diagnosed during pregnancy), a postpartum PAGC group (women diagnosed within 1 year of giving birth), and a control group (women with control diagnosis during pregnancy or within 1 year of giving birth). We used generalized estimation equations to compare perinatal outcomes between study groups. RESULTS: There were 1 786 137 deliveries during the study period; 70 women were diagnosed with gestational PAGC and 191 with postpartum PAGC. The incidence of PAGC was 14.6/100 000 deliveries and did not change during the study period. Women with gestational PAGC (adjusted odds ratio [aAOR] 6.81, 95% confidence interval [CI] 2.97-15.62) and with postpartum PAGC (aOR 2.65, 95% CI 1.25-5.61) had significantly increased odds of a severe maternal morbidity outcome compared with the control group. Babies born to women with gestational PAGC were more likely to be born preterm (aOR 3.11, 95% CI 1.47-6.59) and were at increased odds of severe neonatal complications (aOR 3.47, 95% CI 1.45-8.31) compared with babies born to women without PAC. CONCLUSIONS: The incidence of PAGC has not increased over time perhaps reflecting, in part, the effectiveness of cervical screening and early impacts of human papillomavirus vaccination programs in Australia. The higher rate of preterm birth among the gestational PAGC group is associated with adverse outcomes in babie

PURPOSE: Oxygen is commonly prescribed to patients with severe COPD. However, little is known about the perspectives COPD patients, who do not yet use oxygen, have on this treatment. PATIENTS AND METHODS: A total of 14 oxygen-naïve patients with COPD Gold stages 3-4 and a high symptom burden participated in semi-structured interviews, in which their beliefs and expectations regarding oxygen therapy were explored. We used conventional content analysis to process our qualitative data. RESULTS: Four main themes were identified: seeking information, expected impact on quality of life, expected social impact and stigma, and last phase of life. CONCLUSION: The message that home oxygen should be started, was regarded as bad news by most participants. The rationale behind the therapy and the way it is delivered were unknown to most participants. Some participants anticipated smoking-related stigma and social isolation. Misconceptions such as tank explosions, becoming housebound, full dependency on oxygen and an imminent death were common amongst interviewees. Clinicians should be aware of these fears and assumptions when communicating with patients on this subject.

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 in

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 < 0.001). This increase was independent of maternal age. The odds of serious maternal complications (such as acute abdomen, acute renal failure, and hysterectomy) were significantly higher in the gestational cancer group (adjusted odds ratio (AOR) 5.07, 95% CI 3.72 - 6.90) and the postpartum cancer group (AOR 1.55, 95% CI 1.16 - 2.09). There was no increased risk of perinatal mortality in babies born to women with PAC. However, babies of women with gestational cancer (AOR 8.96, 95% CI 6.96 - 11.53) or postpartum cancer (AOR 1.36, 95% CI 1.05 - 1.81) were more likely to be planned preterm birth. Furthermore, babies of women with gestational cancer had increased odds of a severe neonatal adverse outcome (AOR 3.13, 95% CI 2.52 - 4.35). CONCLUSION: Women with

OBJECTIVE: Gabapentin is commonly used to treat pain in children receiving pediatric palliative care. This study describes the real-world use of gabapentin and the associated benefits and adverse effects/events (AEs). METHODS: A prospective, multicenter cohort of standardized data collection after a clinical decision was made to use gabapentin for managing neuropathic or nociplastic pain in children attended on by a pediatric palliative care service. It was conducted across 11 sites in seven countries including hospital, inpatient, and outpatient services. Clinical outcomes were graded using pain scales validated for age and cognitive ability and the National Cancer Institute Common Terminology Criteria for Adverse Events (NCICTCAE) at baseline, 14 days, 28 days, six weeks and 12 weeks after initiation of gabapentin. Ad-hoc safety reporting continued throughout the study. RESULTS: Data were collected from 127 children with a median age of 4.7 years (IQR 0.1-17.9); 61% had a neurological disorder, 21% advanced cancer and the cohort had a high level of disability (Lansky/Karnofsky performance score 37.1). Gabapentin was prescribed at standard pediatric doses. On average, 76% of children had a reduction in pain and 42% experienced a potential AE. The mean pain score decreased from 6.0 (SD 2.6) at baseline to 3.3 (SD 2.4) at 14 days and 1.8 (SD 1.8) after 12-weeks of gabapentin therapy. Ten percent had increased pain at each time point. AEs did not increase when individual changes over time were accounted for except for somnolence (7%). Serious AEs attributable to gabapentin were possible or probable in 3% of children. CONCLUSIONS: Gabapentin prescribed at standard doses for advanced cancer and severe neurological injury in children under a pediatric palliative care service was associated with generally improved pain intensity at previously described levels of adverse effects.

Purpose: To compare cancer types, stages, times to treatment, and survival for adolescent and young adults (AYAs) 15-24 years of age with other cancer patients <40 years. Methods: New South Wales Cancer Registry and treatment data were linked to explore differences in cancer type, stage, time to treatment, and survival between AYAs, children, and adults. Multivariable logistic regression and competing-risk regression were adjusted for sociodemographic, diagnostic period, and clinical characteristics. Results: Most common cancers in AYAs and adults were carcinomas compared with leukemias in children. Advanced (regional and distant) stage applied to 33% of AYA solid cancers, which was similar to adult stages, but lower than the 40% for children (adjusted odds ratio 1.21, 95% confidence interval [CI] 1.01-1.47). Proportions starting treatment ≤60 days from diagnosis were 93% for AYAs and children, and 94% for adults, with higher adjusted odds of starting ≤60 days of 1.39 (95% CI 1.11-1.73) for children and 1.23 (95% CI 1.06-1.44) for adults. Five-year disease-specific survival was 90% for AYAs and adults, and 87% for children. The adjusted subhazard ratio for children compared with AYAs was 0.67 (95% CI 0.52-0.88). Age differences in cancer stage, treatment start, and cancer survival varied by cancer type. Conclusions: After adjusting for cancer type, diagnostic period, and sociodemographic characteristics, AYAs had less advanced solid tumors than children; fewer AYAs were treated within 60 days than children and adults; and AYA survival was lower than for children. The potential for residual confounding from leukemia type and other confounders needs further analysis with larger Australia-wide cohorts.

Abstract Introduction Low-dose morphine is prescribed for refractory breathlessness in chronic obstructive pulmonary disease (COPD). Preliminary investigations suggest improved perceived sleep quality, although concerns exist regarding opioid-induced sedation. This study assessed the effects of morphine on subjective sleep quality and alertness, and potential links between sleep quality and breathlessness. Methods Analysis of sleep questionnaire and breathlessness data at baseline and after one week of low-dose slow-release morphine versus placebo according to a double-blind randomised controlled design was performed. Participants were randomised to placebo, 8mg or 16mg/day oral morphine for one week (before further dose escalation). Epworth Sleepiness Scale (ESS), Karolinska Sleep Score (KSS), Leeds Sleep Evaluation Questionnaire (LSEQ) and breathlessness severity scores were assessed. Dose effects on sleep measures were assessed via linear regression (including baseline sleep measures). Drug effects on the relationship between sleep quality and breathlessness were assessed via linear mixed models with random effects and three-way interaction between sleep measures, dose, and visit. Results 156 patients were randomised as follows: 8mg, n=55; 16mg, n=51; placebo n=50. Overall, there was a neutral effect of morphine on ESS, KSS, and LSEQ (all p>0.05). Morphine did not modify the relationship between sleep measures and breathlessness. Discussion Despite safety concerns, one week of morphine did not negatively impact subjective sleep or daytime alertness measures. There was no clear relationship between morphine’s effects on sleep and next-day breathlessness perception. Objective data assessing sleep an

OBJECTIVES: End-of-life dreams and visions (ELDVs) have been reported throughout history. We aimed to synthesize the research literature on ELDVs to determine the proportions of patients, bereaved families, healthcare professionals, and volunteers reporting ELDVs; ELDV content, timing, and interpretation; and any evidence-based approaches to ELDV-related care. METHODS: A systematic review protocol was registered with PROSPERO (CRD4021282929). CINAHL, Medline, Embase, Emcare, and APA PsycInfo were searched for peer-reviewed English language articles reporting qualitative, quantitative, or mixed methods studies that explored reports of ELDVs by patients, bereaved families, healthcare professionals, or volunteers. Synthesis used both meta-analysis and a narrative approach. RESULTS: Of 2,045 papers identified by searches, 22 were included, describing 18 studies in a variety of settings. Meta-analyses indicated that 77% (95% confidence intervals [CIs] 69-84%) of patients (n = 119) reported an ELDV compared with 32% (95% CIs 21-44%) of bereaved relatives (n = 2,444) and that 80% (95% CIs 59-94%) of healthcare professionals (n = 171) reported either witnessing or being told of an ELDV in the preceding 5 years. Studies of volunteers reported 34% (95% CIs 20-48%) (n = 45) either witnessing or being told of an ELDV over their entire period of service, with 49% of volunteers (95% CIs 33-64%) (n = 39) reporting events occurring in the preceding year. ELDVs reported by patients, bereaved families, healthcare professionals, and volunteers were perceived as being a source of comfort. Healthcare professionals and volunteers expressed a need for further education on how to support patients experiencing ELDVs and their families. SIGNIFICANCE OF RESULTS: ELDVs are experienced by the majority of dying patients and need consideration in delivering holistic end-of-life care. Little if any research has been conducted in acute care facilities.

BackgroundOne-fifth of conveyances to the emergency department (ED) are due to acute-on-chronic breathlessness. Paramedic breathlessness management may ease distress quicker and/or reduce ED conveyances. We evaluated the feasibility of a full trial of a paramedic delivered intervention to reduce avoidable conveyances (recruitment, randomisation, consent, training and intervention acceptability, adherence, data quality, best primary outcome, sample size estimation). The intervention comprised evidence-based non-drug techniques and a self-management booklet.MethodsThis mixed-methods feasibility cluster randomised controlled trial (ISRCTN80330546) with embedded qualitative study about trial processes, training and intervention delivery, randomised paramedics to usual care or to intervention+usual care. Retrospective patient consent to use call-out data and prospective patient/carer consent for follow-up was sought. Potential primary outcomes were breathlessness intensity (numerical rating scale) and ED conveyance. Follow-up included an interview for patients/carers and questionnaires at 14 days, 1 and 6 months and paramedic focus groups and survey.ResultsRecruitment was during the COVID-19 pandemic, leading to high demands on paramedics and fewer call-outs by eligible patients. We enrolled 29 paramedics; 9 withdrew. Randomisation/trial procedures were acceptable. Paramedics recruited 13 patients; 8 were followed up. Data quality was good. The intervention did not extend call-out time, was delivered with fidelity and no contamination and was acceptable to patients, carers, and paramedics. There were no repeat call-outs < 48 hours. Recruitment stop-go criteria were not met. We had insu

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.

BACKGROUND: Not being able to work has negative health, social and financial consequences. Persisting breathlessness is prevalent in working-aged people. Is it associated with lower workforce participation? This study, using the South Australian Health Omnibus, aimed to explore associations between paid workforce participation and persisting breathlessness intensity, and economic impacts on income in people of working age. METHODS: This cross-sectional study conducted face-to-face interviews with a random sample of adults in South Australia (n = 8916). Questions included key demographic data, workforce participation and the presence and intensity of persisting breathlessness. Data from working-aged respondents (20-65 years of age) were standardised to the census for regression analyses. Work was coded to paid full- or part-time work or 'other'. Persisting breathlessness (more than three of the last six months) used the modified Medical Research Council breathlessness scale (aggregated to 0, 1, 2-4). Opportunity cost valuations compared annual income foregone by persisting breathlessness severity. RESULTS: Of people interviewed, 6,608 were working-aged (49.9% male; 67.5% had post-secondary qualifications; 70.9% were in paid full- or part-time work; and 1.7% had mMRC score 2-4). Workforce participation dropped in working aged people with increasing breathlessness: mMRC 0, 70.6%; mMRC 1, 51.7%; mMRC 2-4, 20.3%. In the regression model, people with the most severe breathlessness were much less likely to work (OR 0.14; 95% CI 0.09, 0.22). Annual income foregone by people with persisting breathlessness was AU$10.7 billion (AU$9.1b for full-time and AU$1.6b for part-time work; range AU$5.9b, AU$49.7b). CONCLUSION: Worsening persisting breathlessness is associated with lower workforce participation with direct financial consequences, greatest for older males.

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.