All Outputs (145)

Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members (2023)
Journal Article
Coombes, L., Harðardóttir, D., Braybrook, D., Roach, A., Scott, H., Bristowe, K., …Harding, R. (in press). Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members. Patient, https://doi.org/10.1007/s40271-023-00627-w

Background: Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects... Read More about Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members.

Towards optimal use of antithrombotic therapy of people with cancer at the end of life: A research protocol for the development and implementation of the SERENITY shared decision support tool (2023)
Journal Article
Goedegebuur, J., Abbel, D., Accassat, S., Achterberg, W. P., Akbari, A., Arfuch, V. M., …Noble, S. I. (2023). Towards optimal use of antithrombotic therapy of people with cancer at the end of life: A research protocol for the development and implementation of the SERENITY shared decision support tool. Thrombosis Research, 228, 54-60. https://doi.org/10.1016/j.thromres.2023.05.008

BACKGROUND: Even though antithrombotic therapy has probably little or even negative effects on the well-being of people with cancer during their last year of life, deprescribing antithrombotic therapy at the end of life is rare in practice. It is oft... Read More about Towards optimal use of antithrombotic therapy of people with cancer at the end of life: A research protocol for the development and implementation of the SERENITY shared decision support tool.

Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations (2023)
Journal Article
Leniz, J., Davies, J. M., Bone, A. E., Hocaoglu, M., Verne, J., Barclay, S., …Sleeman, K. E. (2023). Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations. Palliative medicine, https://doi.org/10.1177/02692163231167212

Background: The number and proportion of home deaths in the UK increased during the Covid-19 pandemic. It is not known whether these changes were experienced disproportionately by people from different socioeconomic groups. Aim: To examine the associ... Read More about Deaths at home, area-based deprivation and the effect of the Covid-19 pandemic: An analysis of mortality data across four nations.

The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis (2023)
Journal Article
Gambe, R. G., Clark, J., Meddick-Dyson, S. A., Ukoha-Kalu, B. O., Nyaaba, G. N., & Murtagh, F. E. (2023). The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis. PLOS Global Public Health, 3(4), Article e0001785. https://doi.org/10.1371/journal.pgph.0001785

There is an increasing prevalence of cancer in Africa with approximately 80% of cancers diagnosed at an advanced stage. High out-of-pocket healthcare costs and overstretched health systems lead to heavy reliance on informal carers for cancer care. Th... Read More about The roles and experiences of informal carers providing care to people with advanced cancer in Africa—A systematic review and critical interpretive analysis.

Exploring the experiences of support with parentally bereaved children and their surviving parents using constructivist grounded theory (2023)
Thesis
Wray, A. (2023). Exploring the experiences of support with parentally bereaved children and their surviving parents using constructivist grounded theory. (Thesis). Hull York Medical School. https://hull-repository.worktribe.com/output/4609487

Background: In the UK, 46,300 children are bereaved of a parent each year. We understand bereaved people need a supportive response from those around them. However, there is limited evidence to inform our understanding of this.
Aim: To explore how c... Read More about Exploring the experiences of support with parentally bereaved children and their surviving parents using constructivist grounded theory.

Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study (2023)
Journal Article
Scott, H. M., Coombes, L., Braybrook, D., Roach, A., Harðardóttir, D., Bristowe, K., Ellis-Smith, C., Downing, J., Murtagh, F. E., Farsides, B., Fraser, L. K., Bluebond-Langner, M., & Harding, R. (2023). Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study. Palliative medicine, 37(6), 856-865. https://doi.org/10.1177/02692163231165101

Background: Despite being a core domain of palliative care, primary data on spiritual and existential concerns has rarely been collected among children with life-limiting and life-threatening conditions and their families. Existing evidence has tende... Read More about Spiritual, religious, and existential concerns of children and young people with life-limiting and life-threatening conditions: A qualitative interview study.

Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV) (2023)
Journal Article
Hocaoglu, M. B., Murtagh, F. E., Walshe, C., Chambers, R. L., Maddocks, M., Sleeman, K. E., …the CovPall study team. (2023). Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV). Health and quality of life outcomes, 21(1), Article 29. https://doi.org/10.1186/s12955-023-02102-4

Background: Patient-centred measures to capture symptoms and concerns have rarely been reported in severe COVID. We adapted and tested the measurement properties of the proxy version of the Integrated Palliative care Outcome Scale–IPOS-COV for severe... Read More about Adaptation and multicentre validation of a patient-centred outcome scale for people severely ill with COVID (IPOS-COV).

How is community based ‘out-of-hours’ care provided to patients with advanced illness near the end of life: A systematic review of care provision (2023)
Journal Article
Firth, A. M., Lin, C. P., Yi, D. H., Goodrich, J., Gaczkowska, I., Waite, F., …Evans, C. J. (2023). How is community based ‘out-of-hours’ care provided to patients with advanced illness near the end of life: A systematic review of care provision. Palliative medicine, 37(3), 310-328. https://doi.org/10.1177/02692163231154760

Background: Deaths in the community are increasing. However, community palliative care out-of-hours is variable. We lack detailed understanding of how care is provided out-of-hours and the associated outcomes. Aim: To review systematically the compon... Read More about How is community based ‘out-of-hours’ care provided to patients with advanced illness near the end of life: A systematic review of care provision.

Over a third of palliative medicine physicians meet burnout criteria: Results from a survey study during the COVID-19 pandemic (2023)
Journal Article
Boland, J. W., Kabir, M., Spilg, E. G., Webber, C., Bush, S. H., Murtagh, F., & Lawlor, P. G. (2023). Over a third of palliative medicine physicians meet burnout criteria: Results from a survey study during the COVID-19 pandemic. Palliative medicine, 37(3), 343-354. https://doi.org/10.1177/02692163231153067

Background: Palliative medicine physicians may be at higher risk of burnout due to increased stressors and compromised resilience during the COVID-19 pandemic. Burnout prevalence and factors influencing this among UK and Irish palliative medicine phy... Read More about Over a third of palliative medicine physicians meet burnout criteria: Results from a survey study during the COVID-19 pandemic.

Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved] (2023)
Journal Article
Chambers, R. L., Pask, S., Higginson, I. J., Barclay, S., Murtagh, F. E., & Sleeman, K. E. (2023). Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved]. AMRC Open Research, 4, Article 19. https://doi.org/10.12688/amrcopenres.13079.2

Background: In England, Integrated Care Systems have been established to improve integration of care, as part of the NHS Long Term Plan. For people near the end of life, palliative care can improve integration of care. We aimed to understand whether... Read More about Inclusion of palliative and end of life care in health strategies aimed at integrated care: a documentary analysis [version 2; peer review: 2 approved].

A non-randomised controlled study to assess the effectiveness of a new proactive multidisciplinary care intervention for older people living with frailty (2023)
Journal Article
Murtagh, F. E., Okoeki, M., Ukoha-kalu, B. O., Khamis, A., Clark, J., Boland, J. W., …Johnson, M. J. (2023). A non-randomised controlled study to assess the effectiveness of a new proactive multidisciplinary care intervention for older people living with frailty. BMC Geriatrics, 23(1), Article 6. https://doi.org/10.1186/s12877-023-03727-2

Background
Integrated care may improve outcomes for older people living with frailty. We aimed to assess the effectiveness of a new, anticipatory, multidisciplinary care service in improving the wellbeing and quality of life (QoL) of older people li... Read More about A non-randomised controlled study to assess the effectiveness of a new proactive multidisciplinary care intervention for older people living with frailty.

Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation (2023)
Journal Article
Coombes, L., Harðardóttir, D., Braybrook, D., Scott, H. M., Bristowe, K., Ellis-Smith, C., …Harding, R. (2023). Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation. Palliative medicine, https://doi.org/10.1177/02692163231205126

Background: There is no validated outcome measure for use in children’s palliative care outside sub-Saharan Africa. Stakeholders must be involved in the development of such measures to ensure face and content validity. Aim: To gain expert stakeholder... Read More about Achieving consensus on priority items for paediatric palliative care outcome measurement: Results from a modified Delphi survey, engagement with a children’s research involvement group and expert item generation.

Development of a Core Outcome Set for the research and assessment of inoperable malignant bowel obstruction (2023)
Journal Article
Bravington, A., Obita, G., Baddeley, E., Johnson, M. J., Murtagh, F. E., Currow, D. C., …Boland, J. W. (2023). Development of a Core Outcome Set for the research and assessment of inoperable malignant bowel obstruction. PLoS ONE, 18(8), Article e0289501. https://doi.org/10.1371/journal.pone.0289501

BACKGROUND: Malignant bowel obstruction is experienced by 15% of people with advanced cancer, preventing them from eating and drinking and causing pain, nausea and vomiting. Surgery is not always appropriate. Management options include tube or stent... Read More about Development of a Core Outcome Set for the research and assessment of inoperable malignant bowel obstruction.

Consultant-led UK paediatric palliative care services: Professional configuration, services, funding (2023)
Journal Article
Bedendo, A., Hinde, S., Beresford, B., Papworth, A., Phillips, B., Vasudevan, C., …Fraser, L. (2023). Consultant-led UK paediatric palliative care services: Professional configuration, services, funding. BMJ supportive & palliative care, https://doi.org/10.1136/spcare-2023-004172

Objectives: To systematically gather information on the professional team members, services provided, funding sources and population served for all consultant-led specialised paediatric palliative care (SPPC) teams in the UK. Methods: Two-part online... Read More about Consultant-led UK paediatric palliative care services: Professional configuration, services, funding.

Experiences of a Novel Integrated Service for Older Adults at Risk of Frailty: A Qualitative Study (2023)
Journal Article
Wilson, I., Ukoha-kalu, B. O., Okoeki, M., Clark, J., Boland, J. W., Pask, S., …Murtagh, F. E. (2023). Experiences of a Novel Integrated Service for Older Adults at Risk of Frailty: A Qualitative Study. Journal of Patient Experience, 10, https://doi.org/10.1177/23743735231199827

The UK has a significant and growing population of older adults with frailty and complex healthcare needs, necessitating innovative care solutions. This study aimed to explore patients’ and carers’ experiences of a novel integrated service that was s... Read More about Experiences of a Novel Integrated Service for Older Adults at Risk of Frailty: A Qualitative Study.

Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease: a multi-professional scoping review (2022)
Journal Article
Hurst, H., Young, H. M., Nixon, A. C., Ormandy, P., Brettle, A., Mooney, A., …Finnigan, R. (2022). Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease: a multi-professional scoping review. Age and ageing, 51(12), Article afac296. https://doi.org/10.1093/ageing/afac296

The growing older population with advanced chronic kidney disease (ACKD stages 4-5) poses a challenge for healthcare worldwide. The high prevalence of frailty and associated adverse health outcomes highlights concerns for management and interventions... Read More about Outcomes and care priorities for older people living with frailty and advanced chronic kidney disease: a multi-professional scoping review.

Validity and Reliability of the Integrated Palliative Care Outcome Scale in Asian Heart Failure Patients (2022)
Journal Article
Neo, S. H. S., Tan, J. Y. T., Sim, D. K. L., Ng, E. S. L., Loh, J. K. X., Yang, G. M., …Cheung, Y. B. (2022). Validity and Reliability of the Integrated Palliative Care Outcome Scale in Asian Heart Failure Patients. Palliative Medicine Reports, 3(1), 287-295. https://doi.org/10.1089/pmr.2022.0029

Background: The Integrated Palliative Care Outcome Scale (IPOS) was developed in the United Kingdom for health assessment in advanced illness. Objectives: To evaluate the validity and reliability of a culturally adapted IPOS (both patient and staff v... Read More about Validity and Reliability of the Integrated Palliative Care Outcome Scale in Asian Heart Failure Patients.

Primary palliative care in Japan: needs estimation and projections - national database study with international comparisons (2022)
Journal Article
Ito, M., Aoyama, M., Murtagh, F. E., & Miyashita, M. (2022). Primary palliative care in Japan: needs estimation and projections - national database study with international comparisons. BMJ supportive & palliative care, https://doi.org/10.1136/spcare-2022-003743

Objectives: We aimed to estimate the potential population that requires palliative care, clarify the relationship between this population and the rate of ageing in Japan, and compare these trends with those of other countries. Design: We used the nat... Read More about Primary palliative care in Japan: needs estimation and projections - national database study with international comparisons.

Parental death: a systematic review of support experiences and needs of children and parent survivors (2022)
Journal Article
Wray, A., Pickwell-Smith, B., Greenley, S., Pask, S., Bamidele, O., Wright, B., …Boland, J. W. (2022). Parental death: a systematic review of support experiences and needs of children and parent survivors. BMJ supportive & palliative care, https://doi.org/10.1136/spcare-2022-003793

Background: Bereaved people need a supportive response from those around them. Knowing children's and surviving parents' needs following parental death is the first step to ensuring a supportive response. However, no systematic review has reported on... Read More about Parental death: a systematic review of support experiences and needs of children and parent survivors.

Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall) (2022)
Journal Article
Garner, I. W., Walshe, C., Dunleavey, L., Bradshaw, A., Preston, N., Fraser, L. K., …Higginson, I. J. (2022). Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall). BMC Palliative Care, 21(1), Article 176. https://doi.org/10.1186/s12904-022-01070-8

BACKGROUND: Independent charitably funded hospices have been an important element of the UK healthcare response to the COVID-19 pandemic. Hospices usually have different funding streams, procurement processes, and governance arrangements compared to... Read More about Charitably funded hospices and the challenges associated with the COVID-19 pandemic: a mixed-methods study (CovPall).