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Improving the quality of life of people with advanced respiratory disease and severe breathlessness (2019)
Journal Article
Booth, S., & Johnson, M. J. (2019). Improving the quality of life of people with advanced respiratory disease and severe breathlessness. Breathe, 15(3), 198-215. https://doi.org/10.1183/20734735.0200-2019

Advanced respiratory disease (ARD) imposes a greater symptom burden than many cancers but without comparable recognition of the need for supportive and palliative care or the infrastructure for its systematic delivery. Consequently, many people with... Read More

Images depicting headache pain – a tool to aid the diagnosis of cluster headache: a pilot study (2019)
Journal Article
Buture, A., Boland, J. W., Ahmed, F., & Dikomitis, L. (2019). Images depicting headache pain – a tool to aid the diagnosis of cluster headache: a pilot study. Journal of Multidisciplinary Healthcare, 12, 691-698. https://doi.org/10.2147/jmdh.s207128

Introduction and objective: The diagnosis of primary headaches is based on the International Classification of Headache Disorders (ICHD-3). Cluster headache (CH), a debilitating primary headache, is often misdiagnosed as migraine. In the absence of b... Read More

Managing uncertain recovery for patients nearing the end of life in hospital: a mixed-methods feasibility cluster randomised controlled trial of the AMBER care bundle (2019)
Journal Article
Koffman, J., Yorganci, E., Yi, D., Gao, W., Murtagh, F., Pickles, A., …Evans, C. J. (2019). Managing uncertain recovery for patients nearing the end of life in hospital: a mixed-methods feasibility cluster randomised controlled trial of the AMBER care bundle. Trials, 20(1), https://doi.org/10.1186/s13063-019-3612-0

Background The AMBER (Assessment, Management, Best Practice, Engagement, Recovery Uncertain) care bundle is a complex intervention used in UK hospitals to support patients with uncertain recovery. However, it has yet to be evaluated in a randomised... Read More

Oral modified release morphine for breathlessness in chronic heart failure: a randomised placebo-controlled trial (2019)
Journal Article
Johnson, M., Cockayne, S., Currow, D., Bell, K., Hicks, K., Fairhurst, C., …Clark, A. (in press). Oral modified release morphine for breathlessness in chronic heart failure: a randomised placebo-controlled trial. ESC Heart Failure, https://doi.org/10.1002/ehf2.12498

ABSTRACT Aims: Morphine is shown to relieve chronic breathless 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... Read More

Optimised clinical study recruitment in palliative care: success strategies and lessons learned (2019)
Journal Article
White, C., Noble, S., Watson, M., Swan, F., Nelson, A., & Johnson, M. (2019). Optimised clinical study recruitment in palliative care: success strategies and lessons learned. BMJ supportive & palliative care, https://doi.org/10.1136/bmjspcare-2019-001820

Recruitment challenges to clinical research studies in palliative care settings, particularly in hospices, are well documented. However, a recent study (Hospice Inpatient Deep vein thrombosis Detection Study (HIDDen)) performed across five hospices... Read More

Australia-modified Karnofsky Performance Scale and physical activity in COPD and lung cancer: an exploratory pooled data analysis (2019)
Journal Article
Barbetta, C., Allgar, V., Maddocks, M., Ribeiro, C., Wilcock, A., Currow, D. C., …Johnson, M. J. (in press). Australia-modified Karnofsky Performance Scale and physical activity in COPD and lung cancer: an exploratory pooled data analysis. BMJ Supportive & Palliative Care, https://doi.org/10.1136/bmjspcare-2019-001869

Objectives: Patient-relevant measures of functional status are required in chronic obstructive pulmonary disease (COPD) and lung cancer in clinical practice and research. We explored the relationship between the Australia-modified Karnofsky Performa... Read More

Establishing key criteria to define and compare models of specialist palliative care: a mixed-methods study using qualitative interviews and Delphi survey (2019)
Journal Article
Firth, A. M., O’Brien, S. M., Guo, P., Seymour, J., Richardson, H., Bridges, C., …Murtagh, F. E. (2019). Establishing key criteria to define and compare models of specialist palliative care: a mixed-methods study using qualitative interviews and Delphi survey. Palliative medicine, https://doi.org/10.1177/0269216319858237

Background: Specialist palliative care services have various configurations of staff, processes and interventions, which determine how care is delivered. Currently, there is no consistent way to define and distinguish these different models of care.... Read More

Clustering of 27,525,663 death records from the United States based on health conditions associated with death: an example of big health data exploration (2019)
Journal Article
Janssen, D. J., Rechberger, S., Wouters, E. F., Schols, J. M., Johnson, M. J., Currow, D. C., …Spruit, M. A. (2019). Clustering of 27,525,663 death records from the United States based on health conditions associated with death: an example of big health data exploration. Journal of Clinical Medicine, 8(7), https://doi.org/10.3390/jcm8070922

Background: Insight into health conditions associated with death can inform healthcare policy. We aimed to cluster 27,525,663 deceased people based on the health conditions associated with death to study the associations between the health condition... Read More

A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) (2019)
Journal Article
Murtagh, F. E., Ramsenthaler, C., Firth, A., Groeneveld, E. I., Lovell, N., Simon, S. T., …Bausewein, C. (in press). A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliative medicine, 026921631985426. https://doi.org/10.1177/0269216319854264

Background: Few measures capture the complex symptoms and concerns of those receiving palliative care. Aim: To validate the Integrated Palliative care Outcome Scale, a measure underpinned by extensive psychometric development, by evaluating its vali... Read More

Towards person‐centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross‐national multi‐centre qualitative study with key stakeholders (2019)
Journal Article
Bristowe, K., Clift, P., James, R., Josh, J., Platt, M., Whetham, J., …Harding, R. (2019). Towards person‐centred care for people living with HIV: what core outcomes matter, and how might we assess them? A cross‐national multi‐centre qualitative study with key stakeholders. HIV Medicine, 20(8), 542-554. https://doi.org/10.1111/hiv.12758

Objectives People living with HIV (PLWH) have multidimensional concerns requiring person‐centred care. Routine use of patient‐reported outcome measures (PROMs) improves outcomes. No brief PROM currently reflects the breadth of concerns for PLWH. This... Read More

An integrated understanding of the complex drivers of emergency presentations and admissions in cancer patients: qualitative modelling of secondary-care health professionals’ experiences and views (2019)
Journal Article
Chen, H., Walabyeki, J., Johnson, M., Boland, E., Seymour, J., & Macleod, U. (2019). An integrated understanding of the complex drivers of emergency presentations and admissions in cancer patients: qualitative modelling of secondary-care health professionals’ experiences and views. PloS one, 14(5), https://doi.org/10.1371/journal.pone.0216430

The number of cancer-related emergency presentations and admissions has been steadily increasing in the UK. Drivers of this phenomenon are complex, multifactorial and interlinked. The main objective of this study was to understand the complexity of e... Read More

A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3–5 chronic kidney diseases: study protocol (2019)
Journal Article
Olagunju, A. T., Fadipe, B., Buraimoh, R. W., Ale, O. K., Umeizudike, T. I., Ogbolu, R. E., …Harding, R. (2019). A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3–5 chronic kidney diseases: study protocol. Annals of palliative medicine, 8(2), 190-198. https://doi.org/10.21037/apm.2018.10.03

Background: The burden of symptoms and other concerns in chronic kidney disease (CKD) is known to be high, adversely affecting the quality of life of the growing number of those with this condition in developing countries. In this paper, we describe... Read More

The roles of dispositional coping style and social support in helping people with respiratory disease cope with a breathlessness crisis (2019)
Journal Article
Garcia, M., Luckett, T., Johnson, M., Hutchinson, A., Lal, S., & Phillips, J. (2019). The roles of dispositional coping style and social support in helping people with respiratory disease cope with a breathlessness crisis. Journal of advanced nursing, 75(9), 1953-1965. https://doi.org/10.1111/jan.14039

Aim: To explore the role of coping moderators in self-management of breathlessness crises by people with advanced respiratory disease. Design: A secondary analysis of semi-structured interview data. Methods: Interviews with patients who had a... Read More

Parental life-limiting illness: What do we tell the children? (2019)
Journal Article
Fearnley, R., & Boland, J. W. (2019). Parental life-limiting illness: What do we tell the children?. Healthcare, 7(1), 47. https://doi.org/10.3390/healthcare7010047

Being diagnosed with and having a life-limiting illness is a stressful experience which is compounded when the patient has dependent children. An important aspect of the patient’s psychosocial care should include recognition that their children are a... Read More

Pulmonary rehabilitation, physical activity, respiratory failure, and palliative respiratory care (2019)
Journal Article
Spruit, M. A., Rochester, C. L., Pitta, F., Kenn, K., Schols, A. M., Hart, N., …Franssen, F. M. E. (2019). Pulmonary rehabilitation, physical activity, respiratory failure, and palliative respiratory care. Thorax, 74(7), 693-699. https://doi.org/10.1136/thoraxjnl-2018-212044

The CIRO Academy in Horn (the Netherlands) organized a two-day meeting to present and discuss the studies published in 2017 pertaining to key priority areas of respiratory and critical care medicine. This report provides a comprehensive review of the... Read More

Airflow relieves chronic breathlessness in people with advanced disease: an exploratory systematic review and meta-analyses (2019)
Journal Article
Swan, F., Newey, A., Bland, M., Allgar, V., Booth, S., Bausewein, C., …Johnson, M. (2019). Airflow relieves chronic breathlessness in people with advanced disease: an exploratory systematic review and meta-analyses. Palliative medicine, 33(6), 618-633. https://doi.org/10.1177/0269216319835393

Background: Chronic breathlessness is a neglected symptom of advanced diseases. Aim: To examine the effect of airflow for chronic breathlessness relief. Design: Exploratory systematic review and meta-analysis. Data sources: Medline, CINA... Read More

Delirium management by palliative medicine specialists: a survey from the association for palliative medicine of Great Britain and Ireland (2019)
Journal Article
Boland, J. W., Kabir, M., Bush, S. H., Spiller, J. A., Johnson, M. J., Agar, M., & Lawlor, P. (in press). Delirium management by palliative medicine specialists: a survey from the association for palliative medicine of Great Britain and Ireland. BMJ supportive & palliative care, bmjspcare-2018-001586. https://doi.org/10.1136/bmjspcare-2018-001586

Objectives Delirium is common in palliative care settings. Management includes detection, treatment of cause(s), non-pharmacological interventions and family support; strategies which are supported with varying levels of evidence. Emerging evidence s... Read More