Uncertainty and COVID-19: how are we to respond?

As if writing prophetically about the global Covid-19 pandemic, in 1984 Eddy suggested, “Uncertainty creeps into medical practice through every pore. Whether a physician is defining a disease, making a diagnosis, selecting a procedure, observing outcomes, assessing probabilities, assigning preferences, or putting it all together, he (or she) is walking on very slippery terrain” 1. Covid-19 has rapidly become a disease associated with unbridled uncertainty with its aetiology and management, for the healthcare systems and health professionals who provide care, and among its ultimate victims, patients and their families

To What Extent Do the NRS and CRQ Capture Change in Patients' Experience of Breathlessness in Advanced Disease? Findings From a Mixed-Methods Double-Blind Randomized Feasibility Trial.

CONTEXT: Chronic or refractory breathlessness is common and distressing. To evaluate new treatments, outcome measures that capture change in patients' experience are needed. OBJECTIVES: To explore the extent to which the numerical rating scale (NRS) worst and average, and the Chronic Respiratory Questionnaire capture change in patients' experience during a trial of mirtazapine for refractory breathlessness. METHODS: Convergent mixed-methods design embedded within a randomized trial comprising 1) semi-structured qualitative interviews (considered to be the gold standard) and 2) outcome measure data collected pre- and post-intervention. Data were integrated, exploring examples where findings agreed and disagreed. Adults with advanced cancer, chronic obstructive pulmonary disease, interstitial lung disease, or chronic heart failure, with a modified Medical Research Council dyspnea scale grade 3 or 4 were recruited from three U.K. sites. RESULTS: Data were collected for 22 participants. Eleven had a diagnosis of chronic obstructive pulmonary disease, eight interstitial lung disease, two chronic heart failure, and one cancer. Median age was 71 (56-84) years. Sixteen participants were men. Changes in the qualitative data were commonly captured in the NRS (worst and average) and the Chronic Respiratory Questionnaire. The NRS worst captured change most frequently. Improvement in the emotional domain was associated with physical changes, improved confidence, and control. CONCLUSION: This study found that the NRS using the question "How bad has your breathlessness felt at its worst over the past 24 hours?" captured change across multiple domains, and therefore may be an appropriate primary outcome measure in trials in this population. Future work should confirm the construct validity of this question

How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data.

BACKGROUND: Uncertainty is common in advanced illness but is infrequently studied in this context. If poorly addressed, uncertainty can lead to adverse patient outcomes. AIM: We aimed to understand patient experiences of uncertainty in advanced illness and develop a typology of patients' responses and preferences to inform practice. DESIGN: Secondary analysis of qualitative interview transcripts. Studies were assessed for inclusion and interviews were sampled using maximum-variation sampling. Analysis used a thematic approach with 10% of coding cross-checked to enhance reliability. SETTING/PARTICIPANTS: Qualitative interviews from six studies including patients with heart failure, chronic obstructive pulmonary disease, renal disease, cancer and liver failure. RESULTS: A total of 30 transcripts were analysed. Median age was 75 (range, 43-95), 12 patients were women. The impact of uncertainty was frequently discussed: the main related themes were engagement with illness, information needs, patient priorities and the period of time that patients mainly focused their attention on (temporal focus). A typology of patient responses to uncertainty was developed from these themes. CONCLUSION: Uncertainty influences patient experience in advanced illness through affecting patients' information needs, preferences and future priorities for care. Our typology aids understanding of how patients with advanced illness respond to uncertainty. Assessment of these three factors may be a useful starting point to guide clinical assessment and shared decision making.Simon Noah Etkind is funded as an Academic Clinical Fellow by the National Institute for Health Research. This article presents independent research funded by the National Institute for Health Research (NIHR) under the Programme Grants for Applied Research programme (RP-PG-1210-12015 – C-CHANGE: Delivering high quality and cost-effective care across the range of complexity for those with advanced conditions in the last year of life). Further information is available at http://www.csi.kcl.ac.uk/c-change1.html. The views and opinions expressed by authors in this publication are those of the authors and do not necessarily reflect those of the NHS, the NIHR, MRC, CCF, NETSCC, the NIHR Programme Grants for Applied Research or the Department of Health

Finding a 'new normal' following acute illness: A qualitative study of influences on frail older people's care preferences.

BACKGROUND:: The frail older population is growing, and many frail older people have episodes of acute illness. Patient preferences are increasingly considered important in the delivery of person-centred care and may change following acute illness. AIM:: To explore influences on the care preferences of frail older people with recent acute illness. DESIGN:: Qualitative in-depth individual interviews, with thematic analysis. SETTING/PARTICIPANTS:: Maximum variation sample of 18 patients and 7 nominated family carers from a prospective cohort study of people aged over 65, scoring ⩾5 on the Clinical Frailty Scale, and with recent acute illness, who were not receiving specialist palliative care. Median patient age was 84 (inter-quartile range 81–87), 53% female. Median frailty score 6 (inter-quartile range 5–7). RESULTS:: Key influences on preferences were illness and care context, particularly hospital care; adaptation to changing health; achieving normality and social context. Participants focused on the outcomes of their care; hence, whether care was likely to help them ‘get back to normal’, or alternatively ‘find a new normal’ influenced preferences. For some, acute illness inhibited preference formation. Participants’ social context and the people available to provide support influenced place of care preferences. We combined these findings to model influences on preferences. CONCLUSION:: ‘Getting back to normal’ or ‘finding a new normal’ are key focuses for frail older people when considering their preferences. Following acute illness, clinicians should discuss preferences and care planning in terms of an achievable normal, and carefully consider the social context. Longitudinal research is needed to explore the influences on preferences over time.The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This work was independent research funded by Cicely Saunders International and the Atlantic Philanthropies (grant 24610). The sponsor had no role in the design, methods, subject recruitment, data collection, analysis or preparation of this article. This research was supported by the collaboration for Leadership in Applied Health Research and Care, South London, which is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s University London, and St George’s Healthcare National Health Service (NHS) Trust. I.J.H. is an Emeritus NIHR Senior Investigator. The views expressed in this publication are those of the authors and not necessarily those of the NHS, NIHR, or the Department of Health and Social Care

Disability in Basic Activities of Daily Living Is Associated With Symptom Burden in Older People With Advanced Cancer or Chronic Obstructive Pulmonary Disease: A Secondary Data Analysis.

CONTEXT: Managing activities of daily living is important to people with advanced cancer or chronic obstructive pulmonary disease (COPD). Understanding disability in activities of daily living may inform service planning. OBJECTIVE: To identify the prevalence of disability in activities of daily living, associations and change over time, in older people with advanced cancer or COPD. METHODS: Secondary analysis of International Access, Rights and Empowerment (IARE) studies in adults aged ≥65 years with advanced disease in the United Kingdom, Ireland, and United States, using cross-sectional (IARE I & II) and longitudinal (IARE II, 3 timepoints over 6 months) data. Measures included disability in activities of daily living (Barthel Index), symptom severity (Palliative Outcome Scale), and assistive device use (self-reported). Logistic regression was used to identify relationships between disability and age, sex, living alone, diagnosis, and symptom burden; visual graphical analysis explores individual disability trajectories. RESULTS: One hundred fifty-nine participants were included (140 cancer, 19 COPD). Sixty-five percent had difficulty climbing stairs, 48% bathing, 39% dressing, and 36% mobilizing. Increased disability was independently associated with increased symptom burden (odds ratio, 1.08 [95% CI:1.02-1.15], P = 0.01) and walking unaided (z = 2.35, P = 0.02), but not with primary diagnosis (z = -0.47, P = 0.64). Disability generally increased over time but with wide interindividual variation. CONCLUSION: Disability in activities of daily living in advanced cancer or COPD is common, associated with increased symptom burden, and may be attenuated by use of assistive devices. Individual disability trajectories vary widely, with diverse disability profiles. Services should include rehabilitative interventions, guided by disability in individual activities of daily living

What is the impact of population ageing on the future provision of end-of-life care? Population-based projections of place of death.

BACKGROUND: Population ageing represents a global challenge for future end-of-life care. Given new trends in place of death, it is vital to examine where the rising number of deaths will occur in future years and implications for health and social care. AIM: To project where people will die from 2015 to 2040 across all care settings in England and Wales. DESIGN: Population-based trend analysis and projections using simple linear modelling. Age- and gender-specific proportions of deaths in hospital, care home, home, hospice and 'other' were applied to numbers of expected future deaths. Setting/population: All deaths (2004-2014) from death registration data and predicted deaths (2015-2040) from official population forecasts in England and Wales. RESULTS: Annual deaths are projected to increase from 501,424 in 2014 (38.8% aged 85 years and over) to 635,814 in 2040 (53.6% aged 85 years and over). Between 2004 and 2014, proportions of home and care home deaths increased (18.3%-22.9% and 16.7%- 21.2%) while hospital deaths declined (57.9%-48.1%). If current trends continue, numbers of deaths in care homes and homes will increase by 108.1% and 88.6%, with care home the most common place of death by 2040. If care home capacity does not expand and additional deaths occur in hospital, hospital deaths will start rising by 2023. CONCLUSION: To sustain current trends, end-of-life care provision in care homes and the community needs to double by 2040. An infrastructure across care settings that supports rising annual deaths is urgently needed; otherwise, hospital deaths will increase.The author(s) disclosed receipt of the following financial support for the research, authorship and/or publication of this article: This work is independent research funded by Cicely Saunders International and The Atlantic Philanthropies (grant number 24610). This research was supported by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London, which is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s, University London and St George’s Healthcare NHS Trust. I.J.H. is an NIHR Senior Investigator. C.J.E. is funded by a Health Education England (HEE)/NIHR Senior Clinical Lectureship. B.G. is funded by the Calouste Gulbenkian Foundation. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health

The escalating global burden of serious health-related suffering: projections to 2060 by world regions, age groups, and health conditions.

BACKGROUND: Serious life-threatening and life-limiting illnesses place an enormous burden on society and health systems. Understanding how this burden will evolve in the future is essential to inform policies that alleviate suffering and prevent health system weakening. We aimed to project the global burden of serious health-related suffering requiring palliative care until 2060 by world regions, age groups, and health conditions. METHODS: We projected the future burden of serious health-related suffering as defined by the Lancet Commission on Palliative Care and Pain Relief, by combining WHO mortality projections (2016-60) with estimates of physical and psychological symptom prevalence in 20 conditions most often associated with symptoms requiring palliative care. Projections were described in terms of absolute numbers and proportional change compared with the 2016 baseline data. Results were stratified by World Bank income regions and WHO geographical regions. FINDINGS: By 2060, an estimated 48 million people (47% of all deaths globally) will die with serious health-related suffering, which represents an 87% increase from 26 million people in 2016. 83% of these deaths will occur in low-income and middle-income countries. Serious health-related suffering will increase in all regions, with the largest proportional rise in low-income countries (155% increase between 2016 and 2060). Globally, serious health-related suffering will increase most rapidly among people aged 70 years or older (183% increase between 2016 and 2060). In absolute terms, it will be driven by rises in cancer deaths (16 million people, 109% increase between 2016 and 2060). The condition with the highest proportional increase in serious-related suffering will be dementia (6 million people, 264% increase between 2016 and 2060). INTERPRETATION: The burden of serious health-related suffering will almost double by 2060, with the fastest increases occurring in low-income countries, among older people, and people with dementia. Immediate global action to integrate palliative care into health systems is an ethical and economic imperative. FUNDING: Research Challenge Fund, Florence Nightingale Faculty of Nursing, Midwifery and Palliative Care, King's College London

Factors associated with older people's emergency department attendance towards the end of life: a systematic review.

BACKGROUND: Emergency department (ED) attendance for older people towards the end of life is common and increasing, despite most preferring home-based care. We aimed to review the factors associated with older people's ED attendance towards the end of life. METHODS: Systematic review using Medline, Embase, PsychINFO, CINAHL and Web of Science from inception to March 2017. Included studies quantitatively examined factors associated with ED attendance for people aged ≥65 years within the last year of life. We assessed study quality using the QualSyst tool and determined evidence strength based on quality, quantity and consistency. We narratively synthesized the quantitative findings. RESULTS: Of 3824 publications identified, 21 were included, combining data from 1 565 187 participants. 17/21 studies were from the USA and 19/21 used routinely collected data. We identified 47 factors and 21 were included in the final model. We found high strength evidence for associations between ED attendance and palliative/hospice care (adjusted effect estimate range: 0.1-0.94); non-white ethnicity (1.03-2.16); male gender (1.04-1.83, except 0.70 in one sub-sample) and rural areas (0.98-1.79). The final model included socio-demographic, illness and service factors, with largest effect sizes for service factors. CONCLUSIONS: In this synthesis, receiving palliative care was associated with lower ED attendance in the last year of life for older adults. This has implications for service models for older people nearing the end of life. However, there is limited evidence from European countries and none from low or middle-income countries, which warrants further research.This work is independent research funded by Cicely Saunders International and The Atlantic Philanthropies (grant number 24610). The sponsor had no role in the design, methods, subject recruitment, data collection, analysis or preparation of this paper. This research was supported by the Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London, which is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust. C.J.E. holds a HEE/NIHR Senior Clinical Lectureship and I.J.H. is an Emeritus NIHR Senior Investigator. B.G.’s contribution was supported by the Calouste Gulbenkian Foundation

Implementing patient-centred outcome measures in palliative care clinical practice for adults (IMPCOM): Protocol for an update systematic review of facilitators and barriers

Background: Despite the development of patient-centred or patient-reported outcome measures (PCOMs or PROMs) in palliative and end-of-life care over recent years, their routine use in practice faces continuing challenges. Objective: To update a highly cited literature review, identify and synthesise new evidence on facilitators, barriers, lessons learned, PCOMs used, models of implementation, implementation outcomes, costs, and consequences of implementing PCOMs in palliative care clinical practice. Methods: We will search MEDLINE, PsycINFO, CINAHL, Embase, Emcare, SCI-Expanded, SSCI, ESCI, and BNI. The database search will be supplemented by a list of studies from the expert advisory committee, hand-searching of reference lists for included articles, and citations of the original review. We will include primary studies using a PCOM during clinical care of adult patients with advanced disease in palliative care settings and extract data on reported models of implementation, PCOMs, facilitators, barriers, lessons learned, costs, and implementation outcomes. Gough’s Weight of Evidence Framework will be used to assess the robustness and relevance of the studies. We will narratively synthesise and tabulate the findings. This review will follow PRISMA, PRISMA-Abstract, PRISMA-P, and PRISMA-Search as the reporting guidelines. Source of funding: Marie Curie. The funder is not involved in designing or conducting this study. Protocol registration: CRD42023398653 (13/02/2023