Skip to main content

Research Repository

Advanced Search

What do the healthcare experiences of people with long-term conditions tell us about person-centred care? A systematic review. (2019)
Journal Article
Dell Olio, M., Pask, S., Seymour, J., & Reeve, J. (2019). What do the healthcare experiences of people with long-term conditions tell us about person-centred care? A systematic review. European journal for person centered healthcare, 7(4), https://doi.org/10.5750/ejpch.v7i4.1779

Introduction Growing numbers of people now live with long term conditions. For each person, the challenges are multiple and unique to that individual. In recognition of this, health policy places greater emphasis on the delivery of person-centred ca... Read More about What do the healthcare experiences of people with long-term conditions tell us about person-centred care? A systematic review..

Intention-to-treat analyses for randomised controlled trials in hospice/palliative care: the case for analyses to be of people exposed to the intervention. (2019)
Journal Article
Agar, M. R., Fallon, M. T., Currow, D. C., Higginson, I. J., Portenoy, R. K., Hussain, J. A., …Currow, D. C. (2020). Intention-to-treat analyses for randomised controlled trials in hospice/palliative care: the case for analyses to be of people exposed to the intervention. Journal of pain and symptom management, 59(3), 637-645. https://doi.org/10.1016/j.jpainsymman.2019.10.026

© 2019 American Academy of Hospice and Palliative Medicine Context: Minimizing bias in randomized controlled trials (RCTs) includes intention-to-treat analyses. Hospice/palliative care RCTs are constrained by high attrition unpredictable when consent... Read More about Intention-to-treat analyses for randomised controlled trials in hospice/palliative care: the case for analyses to be of people exposed to the intervention..

A feasibility, randomised controlled trial of a complex breathlessness intervention in idiopathic pulmonary fibrosis (BREEZE-IPF): study protocol (2019)
Journal Article
Crooks, M. G., Wright, C., Hart, S. P., Allgar, V., English, A., Swan, F., …Crooks, M. G. (2019). A feasibility, randomised controlled trial of a complex breathlessness intervention in idiopathic pulmonary fibrosis (BREEZE-IPF): study protocol. ERJ Open Research, 5(4), https://doi.org/10.1183/23120541.00186-2019

Introduction: Idiopathic pulmonary fibrosis (IPF) is a chronic and progressive lung disease that causes breathlessness and cough that worsen over time, limiting daily activities and negatively impacting quality of life. Although treatments are now av... Read More about A feasibility, randomised controlled trial of a complex breathlessness intervention in idiopathic pulmonary fibrosis (BREEZE-IPF): study protocol.

What are the main symptoms and concerns reported by patients with advanced chronic heart failure?—a secondary analysis of the Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS) (2019)
Journal Article
Kane, P., Dunleavy, L., Gadoud, A., Guo, P., Oriani, A., & Murtagh, F. E. (2019). What are the main symptoms and concerns reported by patients with advanced chronic heart failure?—a secondary analysis of the Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS). Annals of palliative medicine, 8(5), 775-780. https://doi.org/10.21037/apm.2019.08.10

© Annals of Palliative Medicine. All rights reserved. There is a lack of valid disease-specific patient-reported outcome measures (PROMs) for detecting symptoms and concerns in patients with advanced chronic heart failure (CHF). The Palliative care O... Read More about What are the main symptoms and concerns reported by patients with advanced chronic heart failure?—a secondary analysis of the Palliative care Outcome Scale (POS) and Integrated Palliative care Outcome Scale (IPOS).

Mental wellbeing in bereaved carers: A Health Survey for England population study (2019)
Journal Article
Hodiamont, F., Allgar, V., Currow, D. C., & Johnson, M. J. (in press). Mental wellbeing in bereaved carers: A Health Survey for England population study. BMJ Supportive & Palliative Care, https://doi.org/10.1136/bmjspcare-2019-001957

Objectives: The experience of caregiving may affect carers' well-being into bereavement. We explored associations between mental well-being and previous experience of bereavement of, and caring for, someone close at the end-of-life. Methods: An end-o... Read More about Mental wellbeing in bereaved carers: A Health Survey for England population study.

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 about 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.

Oral modified release morphine for breathlessness in chronic heart failure: a randomized placebo-controlled trial (2019)
Journal Article
Hogg, K. J., Cleland, J. G., Clark, A. L., Johnson, M. J., Cockayne, S., Currow, D. C., …Clark, A. (2019). Oral modified release morphine for breathlessness in chronic heart failure: a randomized placebo-controlled trial. ESC Heart Failure, 6(6), 1149-1160. https://doi.org/10.1002/ehf2.12498

© 2019 The Authors. ESC Heart Failure published by John Wiley & Sons Ltd on behalf of the European Society of Cardiology. Aims: Morphine is shown to relieve chronic breathlessness in chronic obstructive pulmonary disease. There are no definitive da... Read More about Oral modified release morphine for breathlessness in chronic heart failure: a randomized placebo-controlled trial.

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 about Establishing key criteria to define and compare models of specialist palliative care: a mixed-methods study using qualitative interviews and Delphi survey.

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 about 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.

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 about A brief, patient- and proxy-reported outcome measure in advanced illness: Validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS).

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 about 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.

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 about 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.

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 about A longitudinal cohort study of symptoms and other concerns among Nigerian people with stages 3–5 chronic kidney diseases: study protocol.

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 about Parental life-limiting illness: What do we tell the children?.

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 about Pulmonary rehabilitation, physical activity, respiratory failure, and palliative respiratory care.

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 about Airflow relieves chronic breathlessness in people with advanced disease: an exploratory systematic review and meta-analyses.

Haematology nurses' perspectives of their patients' places of care and death: a UK qualitative interview study (2019)
Journal Article
McCaughan, D., Roman, E., Smith, A. G., Garry, A. C., Johnson, M. J., Patmore, R. D., …Howell, D. A. (2019). Haematology nurses' perspectives of their patients' places of care and death: a UK qualitative interview study. European journal of oncology nursing, 39, 70-80. https://doi.org/10.1016/j.ejon.2019.02.003

Purpose Patients with haematological malignancies are more likely to die in hospital, and less likely to access palliative care than people with other cancers, though the reasons for this are not well understood. The purpose of our study was to... Read More about Haematology nurses' perspectives of their patients' places of care and death: a UK qualitative interview study.

Prevalence, symptom burden, and natural history of deep vein thrombosis in people with advanced cancer in specialist palliative care units (HIDDen): a prospective longitudinal observational study (2019)
Journal Article
White, C., Noble, S. I. R., Watson, M., Swan, F., Allgar, V. L., Napier, E., …Johnson, M. J. (2019). Prevalence, symptom burden, and natural history of deep vein thrombosis in people with advanced cancer in specialist palliative care units (HIDDen): a prospective longitudinal observational study. Lancet Haematology, 6(2), e79-e88. doi:10.1016/s2352-3026(18)30215-1

Summary Background The prevalence of deep venous thrombosis in patients with advanced cancer is unconfirmed and it is unknown whether current international thromboprophylaxis guidance is applicable to this population. We aimed to determine prevalen... Read More about Prevalence, symptom burden, and natural history of deep vein thrombosis in people with advanced cancer in specialist palliative care units (HIDDen): a prospective longitudinal observational study.

Invisible and intangible illness: A qualitative interview study of patients’ experiences and understandings of conservatively managed end-stage kidney disease (2019)
Journal Article
Bristowe, K., Selman, L. E., Higginson, I. J., & Murtagh, F. E. (2019). Invisible and intangible illness: A qualitative interview study of patients’ experiences and understandings of conservatively managed end-stage kidney disease. Annals of palliative medicine, 8(2), 121-129. https://doi.org/10.21037/apm.2018.12.06

Background: Increasing numbers of older adults are living with kidney disease. For those with comorbidities, conservative management of end-stage kidney disease is a viable option: dialysis may afford limited or no survival benefit, and perceived bur... Read More about Invisible and intangible illness: A qualitative interview study of patients’ experiences and understandings of conservatively managed end-stage kidney disease.

No excess harms from sustained-release morphine: A randomised placebo-controlled trial in chronic breathlessness (2019)
Journal Article
Ekstrom, M., Agar, M., Currow, D. C., Johnson, M. J., Sbizzera, I., Fairhurst, C., …Currow, D. C. (2019). No excess harms from sustained-release morphine: A randomised placebo-controlled trial in chronic breathlessness. BMJ supportive & palliative care, 10(4), 421-428. https://doi.org/10.1136/bmjspcare-2019-002009

© Author(s) (or their employer(s)) 2019. No commercial re-use. See rights and permissions. Published by BMJ. Objectives: We aimed to identify and evaluate: (1) treatment-emergent adverse events (TEAE (worse or new since baseline)) and the subgroup of... Read More about No excess harms from sustained-release morphine: A randomised placebo-controlled trial in chronic breathlessness.