Benefits of specialist palliative care by identifying active ingredients of service composition, structure, and delivery model: A systematic review with meta-analysis and meta-regression.

BACKGROUND: Specialist 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 FINDINGS: We 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. CONCLUSIONS: Using, 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.

Dyspnoea in acutely ill mechanically ventilated adult patients: an ERS/ESICM statement.

This statement outlines a review of the literature and current practice concerning the prevalence, clinical significance, diagnosis and management of dyspnoea in critically ill, mechanically ventilated adult patients. It covers the definition, pathophysiology, epidemiology, short- and middle-term impact, detection and quantification, and prevention and treatment of dyspnoea. It represents a collaboration of the European Respiratory Society and the European Society of Intensive Care Medicine. Dyspnoea ranks among the most distressing experiences that human beings can endure. Approximately 40% of patients undergoing invasive mechanical ventilation in the intensive care unit (ICU) report dyspnoea, with an average intensity of 45 mm on a visual analogue scale from 0 to 100 mm. Although it shares many similarities with pain, dyspnoea can be far worse than pain in that it summons a primal fear response. As such, it merits universal and specific consideration. Dyspnoea must be identified, prevented and relieved in every patient. In the ICU, mechanically ventilated patients are at high risk of experiencing breathing difficulties because of their physiological status and, in some instances, because of mechanical ventilation itself. At the same time, mechanically ventilated patients have barriers to signalling their distress. Addressing this major clinical challenge mandates teaching and training, and involves ICU caregivers and patients. This is even more important because, as opposed to pain which has become a universal healthcare concern, very little attention has been paid to the identification and management of respiratory suffering in mechanically ventilated ICU patients.

The cost of providing care by family and friends (informal care) in the last year of life: A population observational study.

INTRODUCTION: Little is known about replacement costs of care provided by informal carers during the last year of life for people dying of cancer and non-cancer diseases. AIM: To estimate informal caregiving costs and explore the relationship with carer and decedent characteristics. DESIGN: National observational study of bereaved carers. Questions included informal end-of-life caregiving into the 2017 Health Survey for England including estimated recalled frequency, duration and intensity of care provision. We estimated replacement costs for a decedent's last year of life valuing time at the price of a substitutable activity. Spearman rank correlations and multivariable linear regression were used to explore relationships with last year of life costs. SETTING/PARTICIPANTS: Adult national survey respondents - England. RESULTS: A total of 7997 adults were interviewed from 5767/9612 (60%) of invited households. Estimated replacement costs of personal care and other help were £27,072 and £13,697 per carer and a national cost of £13.2 billion and £15.5 billion respectively. Longer care duration and intensity, older age, death at home (lived together), non-cancer cause of death and greater deprivation were associated with increased costs. Female sex, and not accessing 'other care services' were related to higher costs for other help only. CONCLUSION: We provide a first adult general population estimate for replacement informal care costs in the last year of life of £41,000 per carer per decedent and highlight characteristics associated with greater costs. This presents a major challenge for future universal care coverage as the pool of people providing informal care diminish with an ageing population.

Creating more comparable cohorts in observational palliative care studies: A proposed framework to improve applicability and replicability of research.

BACKGROUND: Palliative care is characterised by heterogeneous patient and caregiver populations who are provided care in different health systems and a research base including a large proportion of observational, mostly retrospective studies. The inherent diversity of palliative care populations and the often inadequate study descriptions challenge the application of new knowledge into practice and reproducibility for confirmatory studies. Being able to define systematically study populations would significantly increase their generalisability and effective translation into practice. PROPOSAL: Based on an informal consensus process by active palliative care researchers challenged by this problem and a review of the current evidence, we propose an approach to creating more comparable cohorts in observational (non-randomised) palliative care studies that relies on defining the study population in relation to a fixed, well-defined event from which analyses are built ('anchoring'). In addition to providing a detailed and complete description of the study population, anchoring is the critical step in creating more comparable cohorts in observational palliative care studies. Anchoring can be done with respect to a single or multiple data points, and can support both prospective and retrospective data collection and analysis. DISCUSSION: Anchoring the cohort to reproducible data points will help create more comparable cohorts in palliative care whilst mitigating its inherent heterogeneity. This, in turn, will help optimise the generalisability, applicability and reproducibility of observational palliative care studies to strengthen the evidence base and improve practice.

Improving the Detection, Assessment, Management and Prevention of Delirium in Hospices (the DAMPen-D study): Feasibility study of a flexible and scalable implementation strategy to deliver guideline-adherent delirium care.

BACKGROUND: Delirium is a complex condition, stressful for all involved. Although highly prevalent in palliative care settings, it remains underdiagnosed and associated with poor outcomes. Guideline-adherent delirium care may improve its detection, assessment and management. AIM: To inform a future definitive study that tests whether an implementation strategy designed to improve guideline-adherent delirium care in palliative care settings improves patient outcomes (reduced proportion of in-patient days with delirium). DESIGN: With Patient Involvement members, we conducted a feasibility study to assess the acceptability of and engagement with the implementation strategy by hospice staff (intervention), and whether clinical record data collection of process (e.g. guideline-adherent delirium care) and clinical outcomes (evidence of delirium using a validated chart-based instrument;) pre- and 12-weeks post-implementation of the intervention would be possible. SETTING/PARTICIPANTS: In-patient admissions in three English hospices. RESULTS: Between June 2021 and December 2022, clinical record data were extracted from 300 consecutive admissions. Despite data collection during COVID-19, target clinical record data collection (n = 300) was achieved. Approximately two-thirds of patients had a delirium episode during in-patient stay at both timepoints. A 6% absolute reduction in proportion of delirium days in those with a delirium episode was observed. Post-implementation improvements in guideline-adherent metrics include: clinical delirium diagnosis 15%-28%; delirium risk assessment 0%-16%; screening on admission 7%-35%. CONCLUSIONS: Collection of data on delirium outcomes and guideline-adherence from clinical records is feasible. The signal of patient benefit supports formal evaluation in a large-scale study.

Turning a Curve: How People Use Everyday Resources to Negotiate Recovery From Cancer Treatment With Curative Intent.

Many more cancers are treated with intent to cure now than in previous decades, but for most, this involves significant effects from which people need to recover psychologically and socially, as well as physically. This longitudinal photo-elicitation interview study uses grounded theory to explain how people discharged from specialist care made use of everyday social and material resources to manage this process at home. Recovery is presented as a curve in life's pathway requiring gradual reorientation, drawing on social worlds and domestic resources to calibrate this process. Findings are described in three stages: (1) responding to diagnosis and treatment, (2) using social resources for meaning-making, and (3) developing assets for recovery. During treatment, participants drew on past identities to reinforce their sense of self, and personalized health care communication supported this process. In the weeks after treatment, new frameworks of understanding were constructed from perspectives on cancer encountered in the family, workplace, and outpatient clinics. Recovery processes included the negotiation of personal change, the renegotiation of close relationships, and the use of everyday resources to regain three sensations: control, comfort, and continuity. Supportive care would benefit from an individualized exploration of the assets that can help people to negotiate this challenging phase as treatment comes to a close. Possibilities for self-care (the maintenance of health and well-being in the context of everyday life) can be explored and assessed through personalized discussion around the identities, social worlds, and everyday resources available to each individual.

European Respiratory Society clinical practice guideline: palliative care for people with COPD or interstitial lung disease.

There is increased awareness of palliative care needs in people with COPD or interstitial lung disease (ILD). This European Respiratory Society (ERS) task force aimed to provide recommendations for initiation and integration of palliative care into the respiratory care of adult people with COPD or ILD. The ERS task force consisted of 20 members, including representatives of people with COPD or ILD and informal caregivers. Eight questions were formulated, four in the Population, Intervention, Comparison, Outcome format. These were addressed with full systematic reviews and application of Grading of Recommendations Assessment, Development and Evaluation for assessing the evidence. Four additional questions were addressed narratively. An "evidence-to-decision" framework was used to formulate recommendations. The following definition of palliative care for people with COPD or ILD was agreed. A holistic and multidisciplinary person-centred approach aiming to control symptoms and improve quality of life of people with serious health-related suffering because of COPD or ILD, and to support their informal caregivers. Recommendations were made regarding people with COPD or ILD and their informal caregivers: to consider palliative care when physical, psychological, social or existential needs are identified through holistic needs assessment; to offer palliative care interventions, including support for informal caregivers, in accordance with such needs; to offer advance care planning in accordance with preferences; and to integrate palliative care into routine COPD and ILD care. Recommendations should be reconsidered as new evidence becomes available.

Breathlessness limiting exertion in very old adults: findings from the Newcastle 85+ study.

INTRODUCTION: Long-term breathlessness is more common with age. However, in the oldest old (>85 years), little is known about the prevalence, or impact of breathlessness. We estimated breathlessness limiting exertion prevalence and explored (i) associated characteristics; and (ii) whether breathlessness limiting exertion explains clinical and social/functional outcomes. METHODS: Health and socio-demographic characteristics were extracted from the Newcastle 85+ Study cohort. Phase 1 (baseline) and follow-up data (18 months, Phase 2; 36 months, Phase 3; 60 months, Phase 4 after baseline) were examined using descriptive statistics and cross-sectional regression models. RESULTS: Eight hundred seventeen participants provided baseline breathlessness data (38.2% men; mean 84.5 years; SD 0.4). The proportions with any limitation of exertion, or severe limitation by breathlessness were 23% (95% confidence intervals (CIs) 20-25%) and 9% (95%CIs 7-11%) at baseline; 20% (16-25%) and 5% (3-8%) at Phase 4. Having more co-morbidities (odds ratio (OR) 1.34, 1.18-1.54; P < 0.001), or self-reported respiratory (OR 1.88, 1.25-2.82; P = 0.003) or cardiovascular disease (OR 2.38, 1.58-3.58; P < 0.001) were associated with breathlessness limiting exertion. Breathlessness severely limiting exertion was associated with poorer self-rated health (OR 0.50, 029-0.86; P = 0.012), depression (beta-coefficient 0.11, P = 0.001), increased primary care contacts (beta-co-efficient 0.13, P = 0.001) and number of nights in hospital (OR 1.81; 1.02-3.20; P = 0.042). CONCLUSIONS: Breathlessness limiting exertion appears to become less prevalent over time due to death or withdrawal of participants with cardio-respiratory illness. Breathlessness severely limiting exertion had a wide range of service utilisation and wellbeing impacts.

'It's tough. It is hard': A qualitative interview study of staff and volunteers caring for hospice in-patients with delirium.

BACKGROUND: Delirium is a distressing condition often experienced by hospice in-patients. Increased understanding of current multidisciplinary care of delirium is needed to develop interventions in this setting. AIM(S): To explore hospice staff and volunteers' practice, its influences and what may need to change to improve hospice delirium care. DESIGN: Qualitative interview study using behaviour change theory from a critical realist stance. SETTING/PARTICIPANTS: Thirty-seven staff, including different professional groups and roles, and volunteers were purposively sampled from two in-patient hospices. RESULTS: We found that participants' practice focus was on managing hyperactive symptoms of delirium, through medication use and non-pharmacological strategies. Delirium prevention, early recognition and hypoactive delirium received less attention. Our theoretically-informed analysis identified this focus was influenced by staff and volunteers' emotional responses to the distress associated with hyperactive symptoms of delirium as well as understanding of delirium prevention, recognition and care, which varied between staff groups. Non-pharmacological delirium management was supported by adequate staffing levels, supportive team working and a culture of person-centred and family-centred care, although behaviours that disrupted the calm hospice environment challenged this. CONCLUSIONS: Our findings can inform hospice-tailored behaviour change interventions that develop a shared team understanding and engage staff's emotional responses to improve delirium care. Reflective learning opportunities are needed that increase understanding of the potential to reduce patient distress through prevention and early recognition of delirium, as well as person-centred management. Organisational support for adequate, flexible staffing levels and supportive team working is required to support person-centred delirium care.

Doctored photographs create false memories of spectacular childhood events. a replication of Wade et al. (2002) with a Scandinavian twist.

ABSTRACTCan exposure to a doctored photograph of a plausible yet fictitious childhood event create false memories in adults? Twenty years ago, (Wade, K. A., Garry, M., Don Read, J., & Lindsay, D. S. (2002). A picture is worth a thousand lies: Using false photographs to create false childhood memories. Psychonomic Bulletin & Review, 9(3), 597-603) found that half of the participants reported false beliefs or memories after multiple interview sessions about a doctored photograph of themselves as children on a fictitious hot air balloon ride. In this replication, which rigorously recreated the method and procedure of Wade et al. (2002), participants were interviewed over three interview sessions using free recall and imagery techniques about three true and one fictitious childhood event photos. The balloon ride was modified to a culturally appropriate target event - a Viking ship ride - to ensure that the doctored photograph was functionally equivalent. The results showed almost identical patterns in the two studies: 40% (n = 8) of the participants reported partial or clear false beliefs or memories compared with 50% (n = 10) in the original study. The participants who reported false memories reported detailed and coherent memory narratives of the Viking ship ride not depicted in the doctored photograph. Our study successfully replicating the results of Wade et al. (2002), suggest that memories can relatively easily be implanted, regardless of cultural setting.

"So, when a woman becomes ill, the total structure of the family is affected, they can't do anything " Voices from the community on women with breast cancer in India: a qualitative focus group study.

BACKGROUND: Psychological symptoms are common in women with breast cancer and profoundly affect their role in the family and wider community, varying across cultural backgrounds. Breast cancer is becoming the most common cancer among women in India. We aimed to understand the cultural context within which Indian women with breast cancer living in India, experience psychological concerns from the perspectives of healthcare professionals, volunteers and church members. METHODS: Five focus groups were conducted in South India (clinicians (2 groups)) lay public (3 groups). A topic guide was explored: understanding of breast cancer, experiences of patients with regard to diagnosis and treatment and psychological impact. Groups were audio-recorded and verbatim transcribed. Lay groups were conducted in Malayalam with translation and back-translation. Transcripts were subjected to thematic analysis using "cultural task analysis" as a lens for analysis. RESULTS: Forty-five (oncologists (5), nurses (10), church members (16) and community volunteers working in a palliative care unit (14) participated. Three major themes psychosocial issues related to diagnosis, psychosocial impact of cancer treatment and coping with diagnosis and treatment and nine subthemes emerged from the two groups. All described psychological impact on women with breast cancer including body image, change of family role and their need for support. Family and faith were recognised as the major framework providing key support but also significant stress. Clinicians were also concerned about financial implications and issues around early cancer detection. Laypeople and nurses also commented that poor communication and lack of empathy from doctors aggravated distress. CONCLUSION: Clinical and lay communities were aware of the widespread psychological impact affecting women with breast cancer which are amplified by the patriarchal context within which they live, which extends into clinical practice. Family and faith provide a strong support structure and are a cause of distress, as core roles and expectations are challenged by this disease of womanhood.

Comparing recalled versus experienced symptoms of breathlessness ratings: An ecological assessment study using mobile phone technology.

BACKGROUND AND OBJECTIVE: Recall of breathlessness is important for clinical care but might differ from the experienced (momentary) symptoms. This study aimed to characterize the relationship between momentary breathlessness ratings and the recall of the experience. It is hypothesized that recall is influenced by the peak (worst) and end (most recent) ratings of momentary breathlessness (peak-end rule). METHODS: This study used mobile ecological momentary assessment (mEMA) for assessing breathlessness in daily life through an application installed on participants' mobile phones. Breathlessness ratings (0-10 numerical rating scale) were recorded throughout the day and recalled each night and at the end of the week. Analyses were performed using regular and mixed linear regression. RESULTS: Eighty-four people participated. Their mean age was 64.4 years, 60% were female and 98% had modified Medical Research Council (mMRC) ≥ 1. The mean number of momentary ratings of breathlessness provided was 7.7 ratings/participant/day. Recalled breathlessness was associated with the mean, peak and end values of the day. The mean was most closely associated with the daily recall. Associations were strong for weekly values: peak breathlessness (beta = 0.95, r2  = 0.57); mean (beta = 0.91, r2  = 0.53); and end (beta = 0.67, r2  = 0.48); p < 0.001 for all. Multivariate analysis showed that peak breathlessness had the strongest influence on the breathlessness recalled at the end of the week. CONCLUSION: Over 1 week, recalled breathlessness is most strongly influenced by the peak breathlessness; over 1 day, it is mean breathlessness that participants most readily recalled.

Risk factors for delirium in adult patients receiving specialist palliative care: A systematic review and meta-analysis.

BACKGROUND: Delirium is common and distressing for patients receiving palliative care. Interventions targetting modifiable risk factors in other settings have been shown to prevent delirium. Research on delirium risk factors in palliative care can inform context-specific risk-reduction interventions. AIM: To investigate risk factors for the development of delirium in adult patients receiving specialist palliative care. DESIGN: Systematic review and meta-analysis (PROSPERO CRD42019157168). DATA SOURCES: CINAHL, Cochrane Database of Systematic Reviews, Embase, MEDLINE and PsycINFO (1980-2021) were searched for studies reporting the association of risk factors with delirium incidence/prevalence for patients receiving specialist palliative care. Study risk of bias and certainty of evidence for each risk factor were assessed. RESULTS: Of 28 included studies, 16 conducted only univariate analysis, 12 conducted multivariate analysis. The evidence for delirium risk factors was limited with low to very low certainty. POTENTIALLY MODIFIABLE RISK FACTORS: Opioids and lower performance status were positively associated with delirium, with some evidence also for dehydration, hypoxaemia, sleep disturbance, liver dysfunction and infection. Mixed, or very limited, evidence was found for some factors targetted in multicomponent prevention interventions: sensory impairments, mobility, catheter use, polypharmacy (single study), pain, constipation, nutrition (mixed evidence). NON-MODIFIABLE RISK FACTORS: Older age, male sex, primary brain cancer or brain metastases and lung cancer were positively associated with delirium. CONCLUSIONS: Findings may usefully inform interventions to reduce delirium risk but more high quality prospective cohort studies are required to enable greater certainty about associations of different risk factors with delirium during specialist palliative care.

Development of guidelines to reduce, handle and report missing data in palliative care trials: A multi-stakeholder modified nominal group technique.

BACKGROUND: Missing data can introduce bias and reduce the power, precision and generalisability of study findings. Guidelines on how to address missing data are limited in scope and detail, and poorly implemented. AIM: To develop guidelines on how best to (i) reduce, (ii) handle and (iii) report missing data in palliative care clinical trials. DESIGN: Modified nominal group technique. SETTING/PARTICIPANTS: Patient and public research partners, palliative care clinicians, trialists, methodologists and statisticians attended a 1-day workshop, following which a multi-stakeholder development group drafted the guidelines. RESULTS: Seven main recommendations for reducing missing data, nine for handling missing data and twelve for reporting missing data were developed. The top five recommendations were: (i) train all research staff on missing data, (ii) prepare for missing data at the trial design stage, (iii) address missing data in the statistical analysis plan, (iv) collect the reasons for missing data and (v) report descriptive statistics comparing the baseline characteristics of those with missing and observed data. Reducing missing data, preparing for missing data and understanding the reasons for missing data were greater priorities for stakeholders than how to deal with missing data once they had occurred. CONCLUSION: Comprehensive guidelines on how to address missing data were developed by stakeholders involved in palliative care trials. Implementation of the guidelines will require endorsement of research funders and research journals.

The range and suitability of outcome measures used in the assessment of palliative treatment for inoperable malignant bowel obstruction: A systematic review.

BACKGROUND: Malignant bowel obstruction, a complication of certain advanced cancers, causes severe symptoms which profoundly affect quality of life. Clinical management remains complex, and outcome assessment is inconsistent. AIM: To identify outcomes evaluating palliative treatment for inoperable malignant bowel obstruction, as part of a four-phase study developing a core outcome set. DESIGN: The review is reported in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA); PROSPERO (ID: CRD42019150648). Eligible studies included at least one subgroup with obstruction below the ligament of Treitz undergoing palliative treatment for inoperable malignant bowel obstruction. Study quality was not assessed because the review does not evaluate efficacy. DATA SOURCES: Medline, Embase, the Cochrane Database, CINAHL, PSYCinfo Caresearch, Open Grey and BASE were searched for trials and observational studies in October 2021. RESULTS: A total of 4769 studies were screened, 290 full texts retrieved and 80 (13,898 participants) included in a narrative synthesis; 343 outcomes were extracted verbatim and pooled into 90 unique terms across six domains: physiological, nutrition, life impact, resource use, mortality and survival. Prevalent outcomes included adverse events (78% of studies), survival (54%), symptom control (39%) and mortality (31%). Key individual symptoms assessed were vomiting (41% of studies), nausea (34%) and pain (33%); 19% of studies assessed quality of life. CONCLUSIONS: Assessment focuses on survival, complications and overall symptom control. There is a need for definitions of treatment 'success' that are meaningful to patients, a more consistent approach to symptom assessment, and greater consideration of how to measure wellbeing in this population.

Symptom burden and lived experiences of patients, caregivers and healthcare professionals on the management of malignant bowel obstruction: A qualitative systematic review.

BACKGROUND: Malignant bowel obstruction occurs in up to 50% of people with advanced ovarian and 15% of people with gastrointestinal cancers. Evaluation and comparison of interventions to manage symptoms are hampered by inconsistent evaluations of efficacy and lack of agreed core outcomes. The patient perspective is rarely incorporated. AIM: To synthesise the qualitative data regarding patient, caregiver and healthcare professionals' views and experience of malignant bowel obstruction to inform the development of a core outcome set for the evaluation of malignant bowel obstruction. DESIGN: A qualitative systematic review was conducted, with narrative synthesis. The review protocol was registered prospectively (https://www.crd.york.ac.uk/prospero, CRD42020176393). DATA SOURCES: MEDLINE, EMBASE, CINAHL, PsycINFO and Scopus databases were searched for studies published between 2010 and 2021. Reference lists were screened for further relevant publications, and citation tracking was performed. RESULTS: Nine papers were included, reporting on seven studies which described the views and experiences of malignant bowel obstruction through the perspectives of 75 patients, 13 caregivers and 62 healthcare professionals. Themes across the papers included symptom burden, diverse experiences of interventions, impact on patient quality of life, implications and trajectory of malignant bowel obstruction, mixed experience of communication and the importance of realistic goals of care. CONCLUSION: Some of the most devastating sequelae of malignant bowel obstruction, such as pain and psychological distress, are not included routinely in its clinical or research evaluation. These data will contribute to a wider body of work to ensure the patient and caregiver perspective is recognised in the development of a core outcome set.

Lower workforce participation is associated with more severe persisting breathlessness.

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.

Implementing the battery-operated hand-held fan as an evidence-based, non-pharmacological intervention for chronic breathlessness in patients with chronic obstructive pulmonary disease (COPD): a qualitative study of the views of specialist respiratory clinicians.

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.

Effect of Regular, Low-Dose, Extended-release Morphine on Chronic Breathlessness in Chronic Obstructive Pulmonary Disease: The BEAMS Randomized Clinical Trial.

Importance: Chronic breathlessness is common in people with chronic obstructive pulmonary disease (COPD). Regular, low-dose, extended-release morphine may relieve breathlessness, but evidence about its efficacy and dosing is needed. Objective: To determine the effect of different doses of extended-release morphine on worst breathlessness in people with COPD after 1 week of treatment. Design, Setting, and Participants: Multicenter, double-blind, placebo-controlled randomized clinical trial including people with COPD and chronic breathlessness (defined as a modified Medical Research Council score of 3 to 4) conducted at 20 centers in Australia. People were enrolled between September 1, 2016, and November 20, 2019, and followed up through December 26, 2019. Interventions: People were randomized 1:1:1 to 8 mg/d or 16 mg/d of oral extended-release morphine or placebo during week 1. At the start of weeks 2 and 3, people were randomized 1:1 to 8 mg/d of extended-release morphine, which was added to the prior week's dose, or placebo. Main Outcomes and Measures: The primary outcome was change in the intensity of worst breathlessness on a numerical rating scale (score range, 0 [none] to 10 [being worst or most intense]) using the mean score at baseline (from days -3 to -1) to the mean score after week 1 of treatment (from days 5 to 7) in the 8 mg/d and 16 mg/d of extended-release morphine groups vs the placebo group. Secondary outcomes included change in daily step count measured using an actigraphy device from baseline (day -1) to the mean step count from week 3 (from days 19 to 21). Results: Among the 160 people randomized, 156 were included in the primary analyses (median age, 72 years [IQR, 67 to 78 years]; 48% were women) and 138 (88%) completed treatment at week 1 (48 in the 8 mg/d of morphine group, 43 in the 16 mg/d of morphine group, and 47 in the placebo group). The change in the intensity of worst breathlessness at week 1 was not significantly different between the 8 mg/d of morphine group and the placebo group (mean difference, -0.3 [95% CI, -0.9 to 0.4]) or between the 16 mg/d of morphine group and the placebo group (mean difference, -0.3 [95%, CI, -1.0 to 0.4]). At week 3, the secondary outcome of change in mean daily step count was not significantly different between the 8 mg/d of morphine group and the placebo group (mean difference, -1453 [95% CI, -3310 to 405]), between the 16 mg/d of morphine group and the placebo group (mean difference, -1312 [95% CI, -3220 to 596]), between the 24 mg/d of morphine group and the placebo group (mean difference, -692 [95% CI, -2553 to 1170]), or between the 32 mg/d of morphine group and the placebo group (mean difference, -1924 [95% CI, -47 699 to 921]). Conclusions and Relevance: Among people with COPD and severe chronic breathlessness, daily low-dose, extended-release morphine did not significantly reduce the intensity of worst breathlessness after 1 week of treatment. These findings do not support the use of these doses of extended-release morphine to relieve breathlessness. Trial Registration: ClinicalTrials.gov Identifier: NCT02720822.

Parental burnout during the COVID-19 pandemic.

Increased and long-term parental stress related to one's parental role can lead to parental burnout. In the early phase of the COVID-19 pandemic, families experienced intensified pressure due to the government-initiated contact restrictions applied to prevent the spread of the virus in the population. This study investigates the risk factors and predictors of parental burnout in a large sample of parents (N = 1488) during the COVID-19 pandemic in Norway. Demographic and psychosocial factors were assessed at two timepoints: at the beginning of the pandemic outbreak in March 2020 (T1) and at 3 months follow-up (T2). A hierarchical regression analysis was applied to identify the factors that contribute to parental burnout at T2. Parental burnout was additionally explored across subgroups. Findings revealed that younger age was associated with more parental burnout. Concurrent (T2) use of unhelpful coping strategies, insomnia symptoms, parental stress, and less parental satisfaction was significantly associated with the presence of greater parental burnout (T2). Additionally, parental stress and satisfaction measured in the earliest phase of the pandemic (T1) were associated with parental burnout 3 months later (T2) over and above concurrent parental stress/satisfaction. Unemployed parents and individuals with a mental health condition were identified as subgroups with substantially heightened levels of parental burnout.

El estrés cada vez mayor y a largo plazo relacionado con el papel que desempeñan los padres puede conducir al agotamiento parental. En la primera fase de la pandemia de la COVID-19, las familias sufrieron cada vez más presión debido a las restricciones en el contacto iniciadas por el gobierno que se aplicaron para prevenir la propagación del virus en la población. En este estudio se investigan los factores de riesgo y los factores pronósticos del agotamiento parental en una muestra grande de padres (N = 1488) durante la pandemia de la COVID-19 en Noruega. Se evaluaron factores demográficos y psicosociales en dos intervalos de tiempo: al comienzo de la pandemia en marzo de 2020 (primera fase) y tres meses después (segunda fase). Se aplicó un análisis de regresión jerárquica para identificar los factores que contribuyen al agotamiento de los padres en la segunda fase. Además, se analizó el agotamiento de los padres entre subgrupos. Los resultados revelaron que las edades más jóvenes estuvieron asociadas con un mayor agotamiento parental. El uso simultáneo (en la segunda fase) de estrategias de afrontamiento poco útiles, los síntomas de insomnio, el estrés de los padres y una menor satisfacción de los padres estuvieron asociados significativamente con la presencia de un mayor agotamiento de los padres (segunda fase). Además, el estrés y la satisfacción de los padres medidos en la fase inicial de la pandemia (primera fase) estuvieron asociados con el agotamiento de los padres tres meses después (segunda fase) por encima del estrés y la satisfacción simultáneos de los padres. Los padres y las personas desempleadas con una enfermedad de salud mental se identificaron como subgrupos con niveles considerablemente elevados de agotamiento parental.