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It is likely that the burden of breathlessness in low and middle-income countries (LMICs) is much higher than has been estimated using calculations of disease burden and expected prevalence of the symptom. However, most breathlessness research has been conducted in high-income countries and may not be relevant to LMICs. To address this issue, we convened an international breathlessness and global health workshop. Our multidisciplinary team of experts (global palliative care, respiratory medicine, epidemiology, palliative medicine, psychiatry, sport science, global public health and health economics) met at the University of Hull for a two-day workshop in May 2024. We had 8 presentations on key issues relevant to global breathlessness research. Our discussions focussed on unexplored questions and links between breathlessness and other health and social issues, in order to develop an agenda for global breathlessness research. Our discussions highlighted (1) the global burden of breathlessness generated by a range of lifestyle, environmental, disease and poverty-related factors, (2) the need for a global healthcare workforce that can address modifiable causes and the symptoms of breathlessness together using an integrated approach, (3) the value of information over clinical effectiveness when considering implementation of breathlessness self-management interventions, (4) Addressing non-clinical outcomes which are meaningful to individuals and families and (5) Developing a language for global breathlessness research which does not assume that the cause of breathlessness is diagnosed or treated. We present our discussions and recommendations for new approaches and paradigms for global breathlessness research to generate discussion—not to provide empirical evidence.

Abstract Background Adults in the intensive care unit (ICU) commonly experience distressing symptoms and other concerns such as pain, delirium, and breathlessness. Breathlessness management is not supported by any ICU guidelines, unlike other symptoms. Aim To review the literature relating to (i) prevalence, intensity, assessment, and management of breathlessness in critically ill adults in the ICU receiving invasive and non-invasive mechanical ventilation (NIV) and high-flow oxygen therapy, (HFOT), (ii) the impact of breathlessness on ICU patients with regard to engagement with rehabilitation. Methods A rapid review and narrative synthesis using the Cochrane Methods Group Recommendations was conducted and reported in accordance with PRISMA. All study designs investigating breathlessness in adult ICU patients receiving either invasive mechanical ventilation (IMV), NIV or HFOT were eligible. PubMed, MEDLINE, The Cochrane Library and CINAHL databased were searched from June 2013 to June 2023. Studies were quality appraised. Results 19 studies representing 2822 ICU patients were included (participants mean age 48 years to 71 years; proportion of males 43–100%). The weighted mean prevalence of breathlessness in ICU patients receiving IMV was 49% (range 34–66%). The proportion of patients receiving NIV self-reporting moderate to severe dyspnoea was 55% prior to initiation. Breathlessness assessment tools included visual analogue scale, (VAS), numerical rating scale, (NRS) and modified BORG scale, (mBORG). In patients receiving NIV the highest reported median (interquartile range [IQR]) VAS, NRS and mBORG scores were 6.2cm (0–10 cm), 5 (2–7) and 6 (2.3–7) respectively (moderate to severe breathlessness). In patients receiving either NIV or HFOT the highest reported median (IQR) VAS, NRS and mBORG scores were 3 cm (0–6 cm), 8 (5–10) and 4 (3–5) respectively. Conclusion Breathlessness in adults receiving IMV, NIV or HFOT in the ICU is prevalent and clinically important with median intensity ratings indicating the presence of moderate to severe symptoms.

Abstract Background Integrated care may improve outcomes for older people living with frailty. We aimed to assess the effectiveness of a new, anticipatory, multidisciplinary care service in improving the wellbeing and quality of life (QoL) of older people living with severe frailty. Methods A community-based non-randomised controlled study. Participants (≥65 years, electronic Frailty Index ≥0.36) received either the new integrated care service plus usual care, or usual care alone. Data collection was at three time points: baseline, 2-4 weeks, and 10-14 weeks. The primary outcome was patient wellbeing (symptoms and other concerns) at 2-4 weeks, measured using the Integrated Palliative care Outcome Scale (IPOS); the secondary outcome was QoL, measured using EQ-5D-5L. To test duration of effect and safety, wellbeing and QoL were also measured at 10-14 weeks. Descriptive statistics were used to characterise and compare intervention and control groups (eligible but had not accessed the new service), with t-test, Chi-Square, or Mann-Whitney U tests (as appropriate) to test differences at each time point. Generalised linear modelling, with propensity score matching, was used for further group comparisons. Data were analysed using STATA v17. Results 199 intervention and 54 control participants were recruited. At baseline, intervention and control groups were similar in age, gender, ethnicity, living status, and body mass index, but not functional status or area deprivation score. At 2-4 weeks, wellbeing had improved in the intervention group but worsened in the control (median IPOS -5 versus 2, p

Abstract Introduction The battery-operated hand-held fan (‘fan’) is an inexpensive and portable non-pharmacological intervention for chronic breathlessness. Evidence from randomised controlled trials suggests the fan reduces breathlessness intensity and improves physical activity in patients with a range of advanced chronic conditions. Qualitative data from these trials suggests the fan may also reduce anxiety and improve daily functioning for many patients. This study aimed to explore barriers and facilitators to the fan’s implementation in specialist respiratory care as a non-pharmacological intervention for chronic breathlessness in patients with chronic obstructive pulmonary disease (COPD). Methods A qualitative approach was taken, using focus groups. Participants were clinicians from any discipline working in specialist respiratory care at two hospitals. Questions asked about current fan-related practice and perceptions regarding benefits, harms and mechanisms, and factors influencing its implementation. Analysis used a mixed inductive/deductive approach. Results Forty-nine participants from nursing (n = 30), medical (n = 13) and allied health (n = 6) disciplines participated across 9 focus groups. The most influential facilitator was a belief that the fan’s benefits outweighed disadvantages. Clinicians’ beliefs about the fan’s mechanisms determined which patient sub-groups they targeted, for example anxious or palliative/end-stage patients. Barriers to implementation included a lack of clarity about whose role it was to implement the fan, what advice to provide patients, and limited access to fans in hospitals. Few clinicians implemented the fan for acute-on-chronic breathlessness or in combination with other interventions. Conclusion Implementation of the fan in specialist respiratory care may require service- and clinician-level interventions to ensure it is routinely recommended as a first-line intervention for chronic breathlessness in patients for whom this symptom is of concern, regardless of COPD stage.

Abstract 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 One-fifth of emergency department presentations by ambulance are due to acute-on-chronic breathlessness. We explored the feasibility of an evaluation-phase, cluster randomised controlled trial (cRCT) of the effectiveness and cost-effectiveness of a paramedic-administered, non-pharmacological breathlessness intervention for people with acute-on-chronic breathlessness at ambulance call-out (BREATHE) regarding breathlessness intensity and conveyance to hospital. Methods This mixed-methods, feasibility cRCT (ISRCTN80330546) randomised paramedics to usual care or intervention plus usual care. Retrospective patient consent to use call-out data (primary end-point) and prospective patient/carer consent for follow-up was sought. Potential primary outcomes included breathlessness intensity (numerical rating scale) and conveyance. Follow-up included: interviews with patients/carers and questionnaires at 14 days, 1 and 6 months; paramedic focus groups and surveys. Results Recruitment was during COVID-19, with high demands on paramedics and fewer call-outs by eligible patients. We enrolled 29 paramedics; nine withdrew. Randomisation/trial procedures were acceptable. Paramedics recruited 13 patients, not meeting recruitment target (n=36); eight patients and three carers were followed-up. Data quality was good but insufficient for future sample size estimation. The intervention did not extend call-out time, was delivered with fidelity and was acceptable to patients, carers and paramedics. There were no repeat call-outs within 48 h. All trained paramedics strongly recommended BREATHE as a highly relevant, simple intervention. Conclusion Patient recruitment to target was not feasible during the pandemic. Training and intervention were acceptable and delivered with fidelity. Results include valuable information on recruitment, consent, attrition and data collection that will inform the design and delivery of a definitive trial.

Background: Chronic breathlessness is a prevalent disabling syndrome affecting many people for years. Identifying the impact of chronic breathlessness on people's activities in the general population is pivotal for designing symptom management strategies. Objective: This study aimed to evaluate the association between chronic breathlessness and activities respondents identify can no longer be undertaken (?activities forgone?). Design: This population-based cross-sectional online survey used a market research company's database of 30,000 registrants for each sex, generating the planned sample size?3000 adults reflecting Australia's 2016 Census by sex, age group, state of residence, and rurality. Setting/Subjects: The population of focus (n?=?583) reported a modified Medical Research Council (mMRC) breathlessness scale ?1 and experienced this breathlessness for ?3 months. Measurements: Activities forgone were categorized by mMRC using coding derived from the Dyspnea Management Questionnaire domains. Activities were classified as ?higher/lower intensity? using Human Energy Expenditure scale. Results: Respondents were male 50.3%; median age 50.0 (IQR 29.0); with 66% living in metropolitan areas; reporting 1749 activities forgone. For people with mMRC 1 (n?=?533), 35% had not given up any activity, decreasing to 9% for mMRC 2 (n?=?38) and 3% for mMRC 3?4 (n?=?12). Intense sport (e.g., jogging and bike riding) was the top activity forgone: 42% (mMRC 1), 32% (mMRC 2), and 36% (mMRC 3?4). For respondents with mMRC 3?4, the next most prevalent activities forgone were ?sexual activities? (14%), ?lower intensity sports? (11%), and ?other activities? (11%). Conclusions: People progressively reduce a wide range of activities because of their chronic breathlessness.

Lack of access to therapeutic opioids continuing causes global health inequalities. Access to morphine for symptom control is regulated under the terms of the Single Convention on Narcotics, countries must submit annual morphine requirement estimates and report consumption to the International Narcotics Control Board (INCB). INCB indicates access to morphine is increasing, however, estimated needs are unreported so changing proportions of needs feasibly met by requirements and consumption are unknown. Retrospective time series-analysis taking cross-sections every five years of gaps between calculated needs for morphine for people who die from cancer and total treatable using estimates of requirements and consumption (1997, 2002, 2007, 2012, 2017). We calculated need using INCB-recommended methods (80% of people who die from cancer require 67.5mg of morphine daily for 90 days (6.075g)) for countries reporting estimates and consumption using Global Burden of Disease cancer deaths by country. Gaps between calculated need and total treatable population using estimates and consumption were calculated. We report proportions of need feasibly met by estimates and consumption for included countries, by World Bank Income group. Global availability of morphine increased, from estimates sufficient to treat 86% of calculated needs in 1997, to 701% in 2017. However, proportion of countries estimating requirements feasibly meeting >100% of calculated needs rose only from 16% to 30%. Almost all Low-and-Middle-Income Countries submitted inadequate estimates with little change in 20 years. Consumption was lower than calculated needs at all time-points. Very few countries reported consumption greater than their estimate of requirement. Most countries submitted morphine estimates insufficient to meet analgesic needs of people who died from cancer. Estimates of requirements contextualise future Consumption, and increases in adequacy of estimates and consumption were minimal over 20 years. Annual publication of calculated morphine needs alongside estimates and consumption may be a key step to drive countries’ accountabilities.

Background Most health service utilisation studies are of people with specific diagnoses or demographic characteristics, and rarely of specific chronic symptoms. The aim of this study was to establish whether population-level health service utilisation increases in people with chronic breathlessness. Methods A cross-sectional analysis was carried out of the South Australian Health Omnibus Survey 2017, a multi-stage, clustered area, systematic sampling survey of adults where questions are administered face-to-face in respondents’ homes. Self-report of health service utilisation in the previous 3 months (medical consultations, emergency department, hospital admission), chronic breathlessness (severity, duration, modified Medical Research Council (mMRC) breathlessness scale) and demographic data were used to predict self-reported health service utilisation. Results A total of 2898 people were included (49.0% male; median age 48.0 years (IQR 32.0–63.0); 64.1% educated beyond school; 55.4% in work; 73.5% had outpatient contact; 6.3% had a hospital admission in the previous 3 months). Chronic breathlessness (mMRC ≥1) was reported by 8.8% of respondents. In bivariable analyses, people with greater contact with health services were older, and a higher proportion were overweight/obese and had more severe chronic breathlessness. In multivariable analyses, chronic breathlessness and older age were positively associated with outpatient care and inpatient care, and people with chronic breathlessness were hospitalised for longer (incidence rate ratio 2.5; 95% CI 1.4–4.5). Conclusion There is a significant association between worse chronic breathlessness and increased health service utilisation. There is a need for greater understanding of factors that initiate contact with health services.

Abstract Aims Morphine is shown to relieve chronic breathlessness in chronic obstructive pulmonary disease. There are no definitive data in people with heart failure. We aimed to determine the effectiveness and cost‐effectiveness of 12 weeks morphine therapy for the relief of chronic breathlessness in people with chronic heart failure compared with placebo. Methods and results Parallel group, double‐blind, randomized, placebo‐controlled, phase III trial of 20 mg daily oral modified release morphine was conducted in 13 sites in England and Scotland: hospital/community cardiology or palliative care outpatients. The primary analysis compared between‐group numerical rating scale average breathlessness/24 hours at week 4 using a covariance pattern linear mixed model. Secondary outcomes included treatment‐emergent harms (worse or new). The trial closed early due to slow recruitment, randomizing 45 participants [average age 72 (range 39–89) years; 84% men; 98% New York Heart Association class III]. For the primary analysis, the adjusted mean difference was 0.26 (95% confidence interval, −0.86 to 1.37) in favour of placebo. All other breathlessness measures improved in both groups (week 4 change‐from‐baseline) but by more in those assigned to morphine. Neither group was excessively drowsy at baseline or week 4. There were no between‐group differences in quality of life (Kansas) or cognition (Montreal) at any time point. There was no exercise‐related desaturation and no change between baseline and week 4 in either group. There was no change in vital signs at week 4. The natriuretic peptide measures fell in both groups but by more in the morphine group [morphine 2169 (1092, 3851) pg/mL vs. placebo 2851 (1694, 5437)] pg/mL. There was no excess serious adverse events in the morphine group. Treatment‐emergent harms during the first week were more common in the morphine group; all apart from 1 were ≤ grade 2. Conclusions We could not answer our primary objectives due to inadequate power. However, we provide novel placebo‐controlled medium‐term benefit and safety data useful for clinical practice and future trial design. Morphine should only be prescribed in this population when other measures are unhelpful and with early management of side effects.

Advanced respiratory disease imposes a greater symptom burden than many cancers but not does have comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with advanced respiratory disease (and those closest to them) have a poor quality of life, disabled by chronic breathlessness, fatigue and other symptoms. They are socially isolated by the consequences of long-term illness and are often financially impoverished. The past decade has seen an increasing realisation that care for this group must improve and that symptom management must be prioritised. Clinical guidelines recommend person-centred care, including access to supportive and palliative care as needed, as part of standard medical practice. Advanced lung disease clinics and specialist breathlessness services (pioneered within palliative care) are developing within respiratory medicine services but are provided inconsistently. This review covers the comprehensive assessment of the patient with advanced respiratory disease, the importance of supporting carers and the current best practice in the management of breathlessness, fatigue and cough. It also suggests ways to incorporate person-centred care into the general respiratory clinic, assisted by better liaison with specialist palliative and primary care. Emerging evidence shows that excellent symptom management leads to better clinical outcomes and reduces inappropriate use of emergency medical services. Key points People living with advanced respiratory disease and severe chronic breathlessness (and those closest to them) have a poor quality of life. Chronic breathlessness is a disabling symptom, and acute-on-chronic/episodic breathlessness is frightening to experience and observe. Chronic breathlessness imposes profound physical limitations and psychosocial burdens on those suffering from it or living with someone experiencing it. Fatigue and cough are two other cardinal symptoms of advanced respiratory disease, with very detrimental effects on quality of life. The impact of all these symptoms can be alleviated to a variable extent by a predominantly non-drug complex intervention. Many of the interventions are delivered primarily by allied health or nursing professionals. Doctors, nurses and other health professionals also need to play an active part in promoting quality of life as part of excellent medical care. A person-centred, psychologically informed approach is needed by all clinicians treating patients with advanced respiratory disease. Educational aims To give specialist respiratory clinicians practical clinical tools to help improve the quality of life of their patients with advanced respiratory disease and chronic breathlessness. To outline the evidence base for these interventions with reference to definitive sources. To highlight the importance of person-centred care in people with respiratory disease at all stages of illness.

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.

Breathlessness is common in the general population. Existing data were obtained primarily with the uni-dimensional modified Medical Research Council breathlessness scale (mMRC) that does not assess intensities of unpleasantness nor physical, emotional and affective dimensions. The aim of this research was to determine the prevalence and intensity of these dimensions of breathlessness in elderly males and any associations with their duration, change over time and mMRC grade. We conducted a population-based, cross-sectional study of 73-year-old males in a county in southern Sweden. Breathlessness was self-reported at one time point using a postal survey including the Dyspnea-12 (D-12), the Multidimensional Dyspnea Profile (MDP) and the mMRC. Presence of an increased dimension score was defined as a score ≥minimal clinically important difference for each dimension scale. Association with the mMRC, recalled change since age 65, and duration of breathlessness were analysed with linear regression. Among 907 men, an increased dimension score was present in 17% (D-12 total score), 33% (MDP A1 unpleasantness), 19% (D-12 physical), 17% (MDP immediate perception), 10% (D-12 affective) and 17% (MDP emotional response). The unpleasantness and affective dimensions were strongly associated with mMRC≥3. Higher MDP and D-12 scores were associated with worsening of breathlessness since age 65, and higher MDP A1 unpleasantness was associated with breathlessness of less than 1 year duration. Increased scores of several dimensions of breathlessness are prevalent in 73-year-old males and are positively correlated with mMRC scores, worsening of breathlessness after age 65, and duration of less than 1 year.

Chronic breathlessness is a disabling syndrome, prevalent in people with advanced chronic obstructive pulmonary disease (COPD). Regular, low-dose, oral sustained-release morphine is approved in Australia to reduce symptomatic chronic breathlessness. We aimed to determine the current prescribing patterns of opioids for chronic breathlessness in COPD in Australian general practice and to define any associated patient and practitioner characteristics. Five years (2011 to 2016) of the Bettering the Evaluation and Care of Health database, an Australian national, continual, cross-sectional study of clinical care in general practice were used. The database included 100 consecutive clinical encounters from almost 1000 general practitioners annually (n=488 100 encounters). Descriptive analyses with subsequent regression models were generated. Breathlessness as a patient-defined reason for encounter was identified in 621 of 4522 encounters where COPD was managed. Opioids were prescribed in 309 of 4522 encounters where COPD was managed (6.8%; (95% CI) 6.1–7.6), of which only 17 were prescribed for breathlessness, and the rest for other conditions almost entirely related to pain. Patient age (45–64 years versus age 80+ years, OR 1.68; 1.19–2.36), Commonwealth Concession Card holders (OR 1.70; 1.23–2.34) and socioeconomic disadvantage (OR 1.30; 1.01–1.68) were associated with increased likelihood of opioid prescription at COPD encounters. The rate of opioid prescriptions rose over the 5 years of study. In primary care encounters for COPD, opioids were prescribed in 6.8% of cases, but almost never for breathlessness. These data create a baseline against which to compare changes in prescribing as the treatment of chronic breathlessness evolves.

Abstract Background Those affected by advanced fibrotic interstitial lung diseases have limited treatment options and in the terminal stages, the focus of care is on symptom management. However, quantitatively, little is known about symptom prevalence. We aimed to determine the prevalence of symptoms in Progressive Idiopathic Fibrotic Interstitial Lung Disease (PIF-ILD). Methods Searches on eight electronic databases including MEDLINE for clinical studies between 1966 and 2015 where the target population was adults with PIF-ILD and for whom the prevalence of symptoms had been calculated. Results A total of 4086 titles were screened for eligibility criteria; 23 studies were included for analysis. The highest prevalence was that for breathlessness (54–98%) and cough (59–100%) followed by heartburn (25–65%) and depression (10–49%). The heterogeneity of studies limited their comparability, but many of the symptoms present in patients with other end-stage disease were also seen in PIF-ILD. Conclusions This is the first quantitative review of symptoms in people with Progressive Idiopathic Fibrotic Interstitial Lung Diseases. Symptoms are common, often multiple and have a comparable prevalence to those experienced in other advanced diseases. Quantification of these data provides valuable information to inform the allocation of resources.

Abstract Background Haematological malignancies (leukaemias, lymphomas and myeloma) are complex cancers that are relatively common, affect all ages and have divergent outcomes. Although the symptom burden of these diseases is comparable to other cancers, patients do not access specialist palliative care (SPC) services as often as those with other cancers. To determine the reasons for this, we asked SPC practitioners about their perspectives regarding the barriers and facilitators influencing haematology patient referrals. Methods We conducted a qualitative study, set within the United Kingdom’s (UK’s) Haematological Malignancy Research Network (HMRN: www.hmrn.org), a population-based cohort in the North of England. In-depth, semi-structured interviews were conducted with 20 SPC doctors and nurses working in hospital, community and hospice settings between 2012 and 2014. Interviews were digitally audio-recorded, transcribed and analysed for thematic content using the ‘Framework’ method. Results Study participants identified a range of barriers and facilitators influencing the referral of patients with haematological malignancies to SPC services. Barriers included: the characteristics and pathways of haematological malignancies; the close patient/haematology team relationship; lack of role clarity; late end of life discussions and SPC referrals; policy issues; and organisational issues. The main facilitators identified were: establishment of inter-disciplinary working patterns (co-working) and enhanced understanding of roles; timely discussions with patients and early SPC referral; access to information platforms able to support information sharing; and use of indicators to ‘flag’ patients’ needs for SPC. Collaboration between haematology and SPC was perceived as beneficial and desirable, and was said to be increasing over time. Conclusions This is the first UK study to explore SPC practitioners’ perceptions concerning haematology patient referrals. Numerous factors were found to influence the likelihood of referral, some of which related to the organisation and delivery of SPC services, so were amenable to change, and others relating to the complex and unique characteristics and pathways of haematological cancers. Further research is needed to assess the extent to which palliative care is provided by haematology doctors and nurses and other generalists and ways in which clinical uncertainty could be used as a trigger, rather than a barrier, to referral.

BackgroundSpecialist palliative care (SPC) services address the needs of people with advanced illness. Meta-analyses to date have been challenged by heterogeneity in SPC service models and outcome measures and have failed to produce an overall effect. The best service models are unknown. We aimed to estimate the summary effect of SPC across settings on quality of life and emotional wellbeing and identify the optimum service delivery model.Methods and findingsWe conducted a systematic review with meta-analysis and meta-regression. Databases (Cochrane, MEDLINE, CINAHL, ICTRP, clinicaltrials.gov) were searched (January 1, 2000; December 28, 2023), supplemented with further hand searches (i.e., conference abstracts). Two researchers independently screened identified studies. We included randomized controlled trials (RCTs) testing SPC intervention versus usual care in adults with life-limiting disease and including patient or proxy reported outcomes as primary or secondary endpoints. The meta-analysis used, to our knowledge, novel methodology to convert outcomes into minimally clinically important difference (MID) units and the number needed to treat (NNT). Bias/quality was assessed via the Cochrane Risk of Bias 2 tool and certainty of evidence was assessed using the Grading of Recommendations Assessment, Development and Evaluation (GRADE) tool. Random-effects meta-analyses and meta-regressions were used to synthesize endpoints between 2 weeks and 12 months for effect on quality of life and emotional wellbeing expressed and combined in units of MID. From 42,787 records, 39 international RCTs (n = 38 from high- and middle-income countries) were included. For quality of life (33 trials) and emotional wellbeing (22 trials), statistically and clinically significant benefit was seen from 3 months' follow-up for quality of life, standardized mean difference (SMD in MID units) effect size of 0.40 at 13 to 36 weeks, 95% confidence interval (CI) [0.21, 0.59], p < 0.001, I2 = 60%). For quality of life at 13 to 36 weeks, 13% of the SPC intervention group experienced an effect of at least 1 MID unit change (relative risk (RR) = 1.13, 95% CI [1.06, 1.20], p < 0.001, I2 = 0%). For emotional wellbeing, 16% experienced an effect of at least 1 MID unit change at 13 to 36 weeks (95% CI [1.08, 1.24], p < 0.001, I2 = 0%). For quality of life, the NNT improved from 69 to 15; for emotional wellbeing from 46 to 28, from 2 weeks and 3 months, respectively. Higher effect sizes were associated with multidisciplinary and multicomponent interventions, across settings. Sensitivity analyses using robust MID estimates showed substantial (quality of life) and moderate (emotional wellbeing) benefits, and lower number-needed-to-treat, even with shorter follow-up. As the main limitation, MID effect sizes may be biased by relying on derivation in non-palliative care samples.ConclusionsUsing, to our knowledge, novel methods to combine different outcomes, we found clear evidence of moderate overall effect size for both quality of life and emotional wellbeing benefits from SPC, regardless of underlying condition, with multidisciplinary, multicomponent, and multi-setting models being most effective. Our data seriously challenge the current practice of referral to SPC close to death. Policy and service commissioning should drive needs-based referral at least 3 to 6 months before death as the optimal standard of care.

IntroductionMalignant bowel obstruction is a distressing complication of cancer, causing pain, nausea and vomiting, and often has a poor prognosis. Severe and rapidly developing symptoms, a lack of robust clinical guidelines and the need for multidisciplinary input make treatment decision-making challenging. Sharing decision-making with people with malignant bowel obstruction and their caregivers can be difficult, and inconsistent communication creates serious deficiencies in care by amplifying patients' distress and uncertainty. Little attention has been paid to the implicit influences on this process-for example, the role of discipline-related norms and the beliefs of decision-makers. This study will explore how these processes work and develop interventions to improve shared decision-making.Methods and analysisExploring Pathways to Optimise Care (EPOC) is a three-phase study set within a critical realist framework: (i) realist review, to develop explanatory theory describing collaborative decision-making in the management of malignant bowel obstruction; (ii) an in-depth interview study using modified grounded theory to explore the active ingredients of this collaboration in practice settings; and (iii) the presentation to stakeholders (practitioners, patients and caregivers) of integrated results from Phase I (theory developed from the literature) and Phase II (theory developed from current practice) as a basis for intervention mapping. We aim to produce recommendations to address the challenges, and to develop a set of tools to (i) aid interaction around shared decision-making and (ii) aid interprofessional interaction around the management of this condition. Registration details: The realist review is registered with PROSPERO (CRD42022308251).

[This corrects the article DOI: 10.1371/journal.pone.0291525.].

The UK has a significant and growing population of older adults with frailty and complex healthcare needs, necessitating innovative care solutions. This study aimed to explore patients’ and carers’ experiences of a novel integrated service that was set up to address the increasing healthcare needs of older people living with frailty. A qualitative study that combined free-text survey questions with in-depth interviews. This study is part of a larger non-randomized trial of the service, with evaluation of wellbeing and quality of life at baseline, 2 to 4 weeks, and 10 to 14 weeks. Patients (aged 65 and above) with an electronic Frailty Index in the severe range and their informal family carers participated in this study. Data were collected between April 2019 and March 2020. Free text survey responses and interview data were subjected to reflexive thematic analyses. Four themes were generated: the overall experience of the service; interactions within the service; treatment and interventions; and outcomes due to the service. Most participants wanted further follow-up and more extensive integration with other services. Most participants described their overall experience positively, especially the available time to address their full range of concerns, but opportunities to integrate the service more fully and to extend follow-up remain.

BackgroundHomecare workers provide essential care at home for people at end-of-life but are often poorly trained and supported.AimTo explore the experiences and needs of homecare workers and the views of homecare clients and carers, and other community-based health and social care staff about the homecare worker role, including identification of good practice.MethodsIn this qualitative exploratory study, we will conduct 150 semi-structured interviews with homecare workers within three geographic English localities chosen for maximum socio-demographic variation. Eligible participants will be consenting adults providing care services (workers [n = 45], managers [n = 15] community practitioners [n = 30]), receiving care (clients thought to be in the last 6 months of life [n = 30], family carers [n = 15], or commissioners of homecare services supporting end-of-life care [n = 15]. Interviews may adopt a Pictor-guided or standard semi-structured approach according to their preference. Managers and commissioners can contribute to an online focus group if preferred. A range of recruitment strategies will be used, including through homecare agencies, local authorities, local NHS services, charities, voluntary sector groups and social media. Interviews and focus groups will be recorded, transcribed, anonymised, and analysed adopting a case-based approach for each geographic area within-case and then comparison across cases using reflexive thematic analysis. The design and analysis will be informed by Bronfenbrenner's Adapted Ecological Systems theory. This study is registered on the Research Registry (No.8613).ContributionWe will provide evidence on ways to improve the experiences and address the needs of homecare workers in relation to caring for people nearing end-of-life. It will offer insight into good practice around supporting homecare workers including responding to their training and development needs. Findings will inform subsequent stages of an evaluation-phase study of a training resource for homecare workers.

Opioids (e.g. morphine) are affordable, effective interventions for cancer-related pain. However, equity of access to this key medication remains a global challenge, particularly in low- and middle-income countries. We aimed to explore views of palliative care providers and public-representatives about opioid analgesia access in two States in India. We conducted a qualitative study using semi-structured interviews. Transcribed audio-recordings were subjected to thematic analysis using a Framework Approach. Palliative care providers and public-representatives were purposively sampled from services reporting consistent opioid availability and prescribing (≥4kg per annum) from Karnataka and Kerala. Twenty participants (doctors (10), nurses (4), pharmacists (2), service managers (2) and public-representatives (2) were interviewed. Three themes were identified: 1) Attitudes and awareness: opioid treatments are perceived as end-of-life (last days/weeks) interventions; fears of addiction and misunderstanding of pain management goals limit access. 2) Expected and unexpected inequities: patients/carers from lower socioeconomic strata accept doctor recommendations if opioids are affordable, more educated patients/families have reservations about opioids, delay access and perceive expensive medicines as better. Non-palliative care specialist doctors have negative entrenched views and require specialist training. 3) Experiential learning-positive experiences can positively alter attitudes (e.g., participants in Kerala report improved attitudes, awareness and understanding influenced by exposure and community awareness, but experience can also reinforce perceptions as end-of-life care. Entrenched negative views are reinforced by poor experiences while positive experiences improve attitudes. To promote access, opioid prescribing must be needs-based rather than prognosis-based. Addressing the lack of training for non-palliative care workforce would help overcome a major barrier.

BackgroundMalignant bowel obstruction is experienced by 15% of people with advanced cancer, preventing them from eating and drinking and causing pain, nausea and vomiting. Surgery is not always appropriate. Management options include tube or stent drainage of intestinal contents and symptom control using medication. Published literature describing palliative interventions uses a broad range of outcome measures, few of which are patient-relevant. This hinders evidence synthesis, and fails to consider the perspectives of people undergoing treatment.AimsTo develop a Core Outcome Set for the assessment of inoperable malignant bowel obstruction with clinician, patient and caregiver involvement, using COMET methodology (Core Outcome Measures in Effectiveness Trials).MethodsA systematic review of clinical trials and observational studies, a rapid review of the qualitative literature and in-depth patient and clinician interviews were conducted to identify a comprehensive list of outcomes. Outcomes were compared and consolidated by the study Steering Group and Patient and Public Involvement contributors, and presented to an international clinical Expert Panel for review. Outcomes from the finalised list were rated for importance in a three-round international Delphi process: results of two survey rounds were circulated to respondents, and two separate consensus meetings were conducted with clinicians and with patients and caregivers via virtual conferencing, using live polling to reach agreement on a Core Outcome Set.Results130 unique outcomes were identified. Following the independent Expert Panel review, 82 outcomes were taken into round 1 of the Delphi survey; 24 outcomes reached criteria for critical importance across all stakeholder groups and none reached criteria for dropping. All outcomes rated critically important were taken forward for re-rating in round 2 and all other outcomes dropped. In round 2, all outcomes were voted critically important by at least one stakeholder group. Round 2 outcomes were presented again at online consensus meetings, categorised as high ranking (n = 9), middle ranking (n = 7) or low ranking (n = 8). Stakeholders reached agreement on 16 core outcomes across four key domains: Symptom control, Life impact, Treatment outcomes, and Communication and patient preferences.ConclusionUse of this Core Outcome Set can help to address current challenges in making sense of the evidence around treatment for inoperable malignant bowel obstruction to date, and underpin a more robust future approach. Clearer communication and an honest understanding between all stakeholders will help to provide a basis for responsible decision-making in this distressing situation in clinical practice.

Anorexia is experienced by most people with lung cancer during the course of their disease and treatment. Anorexia reduces response to chemotherapy and the ability of patients to cope with, and complete their treatment leading to greater morbidity, poorer prognosis and outcomes. Despite the significant importance of cancer-related anorexia, current therapies are limited, have marginal benefits and unwarranted side effects. In this multi-site, randomised, double blind, placebo controlled, phase II trial, participants will be randomly assigned (1:1) to receive once-daily oral dosing of 100mg of anamorelin HCl or matched placebo for 12 weeks. Participants can then opt into an extension phase to receive blinded intervention for another 12 weeks (weeks 13-24) at the same dose and frequency. Adults (≥18 years) with small cell lung cancer (SCLC); newly diagnosed with planned systemic therapy OR with first recurrence of disease following a documented disease-free interval ≥6 months, AND with anorexia (i.e., ≤ 37 points on the 12-item Functional Assessment of Anorexia Cachexia Treatment (FAACT A/CS) scale) will be invited to participate. Primary outcomes are safety, desirability and feasibility outcomes related to participant recruitment, adherence to interventions, and completion of study tools to inform the design of a robust Phase III effectiveness trial. Secondary outcomes are the effects of study interventions on body weight and composition, functional status, nutritional intake, biochemistry, fatigue, harms, survival and quality of life. Primary and secondary efficacy analysis will be conducted at 12 weeks. Additional exploratory efficacy and safety analyses will also be conducted at 24 weeks to collect data over longer treatment duration. The feasibility of economic evaluations in Phase III trial will be assessed, including the indicative costs and benefits of anamorelin for SCLC to the healthcare system and society, the choice of methods for data collection and the future evaluation design. Trial registration. The trial has been registered with the Australian New Zealand Clinical Trials Registry [ACTRN12622000129785] and approved by the South Western Sydney Local Health District Human Research Ethics Committee [2021/ETH11339]. https://clin.larvol.com/trial-detail/ACTRN12622000129785.

Lack of access to therapeutic opioids continuing causes global health inequalities. Access to morphine for symptom control is regulated under the terms of the Single Convention on Narcotics, countries must submit annual morphine requirement estimates and report consumption to the International Narcotics Control Board (INCB). INCB indicates access to morphine is increasing, however, estimated needs are unreported so changing proportions of needs feasibly met by requirements and consumption are unknown. Retrospective time series-analysis taking cross-sections every five years of gaps between calculated needs for morphine for people who die from cancer and total treatable using estimates of requirements and consumption (1997, 2002, 2007, 2012, 2017). We calculated need using INCB-recommended methods (80% of people who die from cancer require 67.5mg of morphine daily for 90 days (6.075g)) for countries reporting estimates and consumption using Global Burden of Disease cancer deaths by country. Gaps between calculated need and total treatable population using estimates and consumption were calculated. We report proportions of need feasibly met by estimates and consumption for included countries, by World Bank Income group. Global availability of morphine increased, from estimates sufficient to treat 86% of calculated needs in 1997, to 701% in 2017. However, proportion of countries estimating requirements feasibly meeting >100% of calculated needs rose only from 16% to 30%. Almost all Low-and-Middle-Income Countries submitted inadequate estimates with little change in 20 years. Consumption was lower than calculated needs at all time-points. Very few countries reported consumption greater than their estimate of requirement. Most countries submitted morphine estimates insufficient to meet analgesic needs of people who died from cancer. Estimates of requirements contextualise future Consumption, and increases in adequacy of estimates and consumption were minimal over 20 years. Annual publication of calculated morphine needs alongside estimates and consumption may be a key step to drive countries' accountabilities.

BackgroundThe diagnosis of symptomatic cancer-associated thrombosis often causes distress and alarm for patients, especially for those unaware of the risk, or the signs and symptoms to look out for. There are few data about cancer patients' experiences of incidentally diagnosed pulmonary embolism (IPE), where lack of warning (recognised signs, symptoms) may cause delayed diagnosis and aggravate distress.ObjectivesTo explore cancer patients' experience of the diagnosis of and living with incidental pulmonary embolism treated with anticoagulation.MethodsA qualitative study using modified grounded theory approach. Semi-structured interviews were conducted as part of a mixed- methods prospective observational survey study of consenting patients with IPE. Data were subjected to thematic analysis. The qualitative findings are presented.FindingsEleven participants were interviewed (mean age 68.3 years, range 38-82 years; various forms of cancer and stages). Three major themes and one cross-cutting theme were generated. Theme (1): IPE is experienced in the context of cancer and concomitant comorbidities. Issues are understood in the shadow of-and often overshadowed by-current serious illness. Theme (2): Being diagnosed with IPE. Misattribution to cancer or other comorbidities caused delay in help-seeking and diagnosis. Theme (3): Coping with anticoagulation. Participants' incorporated anticoagulation treatment and its effects into their daily routine with acceptance and stoicism. Finally, the cross-cutting theme relates to a lack of information and uncertainty, contributing to distress throughout the experience.ConclusionThe diagnosis of IPE was upsetting and unexpected. Expert and timely information was valued by those with IPE. Education called for about the increased risk of cancer-associated thrombosis and the signs and symptoms to be aware of.

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.

IntroductionBreathlessness is a subjective sensation, so understanding its impacts requires patients' reports, including prospective patient-defined breathlessness as a reason for presenting to general practitioners (GP).The aim of this study was to define the prevalence of breathlessness as a reason for GP consultations while defining the clinico-demographic factors of these patients and the characteristics and outcomes of those consultations.MethodsUsing nine years of the Family Medicine Research Centre database of 100 consecutive encounters from 1,000 practices annually, the patient-defined reason for encounter 'breathlessness' was explored using prospectively collected data in people ≥ 18 years with clinical data coded using the International Classification for Primary Care V2. Dichotomous variables were analysed using chi square and 95% confidence intervals calculated using Kish's formula for a single stage clustered design.ResultsOf all the 755,729 consultations collected over a nine year period from 1 April, 2000, 7255 included breathlessness as a reason for encounter (0.96%; 95% CI 0.93 to 0.99) most frequently attributed to chronic obstructive pulmonary disease. Only 48.3% of GPs saw someone reporting breathlessness. The proportion of consultations with breathlessness increased with age. Breathlessness trebled the likelihood that the consultation occurred in the community rather than the consulting room (pDiscussionBreathlessness is a prevalent symptom in general practitioner. Such prevalence enables future research focused on understanding the temporal pattern of breathlessness and the longitudinal care offered to, and outcomes for these patients, including those who leave the consultation without a diagnosis.