Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality

Harding, R.; Bristowe, K.; Coombes, L.; Murtagh, F. E.M.; Chambers, L.; Bluebond-Langner, M.; Downing, J.; Fraser, L. K.; Aworinde, J.; Ellis-Smith, C.

doi:10.1007/s11136-021-02814-4

Concurrent validity and prognostic utility of the Needs Assessment Tool: Progressive Disease Heart Failure (2022)
Journal Article
King, C., Khamis, A., Ross, J., Murtagh, F. E., Johnson, M. J., & Ramsenthaler, C. (in press). Concurrent validity and prognostic utility of the Needs Assessment Tool: Progressive Disease Heart Failure. Journal of pain and symptom management, https://doi.org/10.1016/j.jpainsymman.2022.01.014

Context: People with advanced heart failure have supportive and palliative needs requiring systematic assessment. Objectives: We aimed to assess the validity of the Needs Assessment Tool: Progressive Disease – Heart Failure (NAT:PD-HF). Methods: Seco... Read More about Concurrent validity and prognostic utility of the Needs Assessment Tool: Progressive Disease Heart Failure.

End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom (2022)
Journal Article
Papworth, A., Hackett, J., Beresford, B., Murtagh, F., Weatherly, H., Hinde, S., Bedendo, A., Walker, G., Noyes, J., Oddie, S., Vasudevan, C., Feltbower, R., Phillips, B., Hain, R., Subramanian, G., Haynes, A., & Fraser, L. K. (2022). End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom. NIHR Open Research, 2(37), https://doi.org/10.3310/nihropenres.13273.1

Background: Although child mortality has decreased over the last few decades, around 4,500 infants and children die in the UK every year, many of whom require palliative care. There is, however, little evidence on paediatric end-of-life care services... Read More about End of life care for infants, children and young people (ENHANCE): Protocol for a mixed methods evaluation of current practice in the United Kingdom.

Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data (2021)
Journal Article
Bayly, J., Bradshaw, A., Fettes, L., Omarjee, M., Talbot-Rice, H., Walshe, C., Sleeman, K. E., Bajwah, S., Dunleavy, L., Hocaoglu, M., Oluyase, A., Garner, I., Cripps, R. L., Preston, N., Fraser, L. K., Murtagh, F. E., Higginson, I. J., & Maddocks, M. (in press). Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data. Palliative medicine, https://doi.org/10.1177/02692163211063397

Background: Palliative rehabilitation involves multi-professional processes and interventions aimed at optimising patients’ symptom self-management, independence and social participation throughout advanced illness. Rehabilitation services were highl... Read More about Understanding the impact of the Covid-19 pandemic on delivery of rehabilitation in specialist palliative care services: An analysis of the CovPall-Rehab survey data.

Communication of poor prognosis between secondary and primary care: protocol for a systematic review with narrative synthesis (2021)
Journal Article
Pocock, L. V., Purdy, S., Barclay, S., Murtagh, F. E., & Selman, L. E. (2021). Communication of poor prognosis between secondary and primary care: protocol for a systematic review with narrative synthesis. BMJ open, 11(12), Article e055731. https://doi.org/10.1136/bmjopen-2021-055731

Introduction People dying in Britain spend, on average, 3 weeks of their last year of life in hospital. Hospital discharge presents an opportunity for secondary care clinicians to communicate to general practitioners (GPs) which patients may have a p... Read More about Communication of poor prognosis between secondary and primary care: protocol for a systematic review with narrative synthesis.

Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall) (2021)
Journal Article
Sleeman, K. E., Cripps, R. L., Murtagh, F. E., Oluyase, A. O., Hocaoglu, M. B., Maddocks, M., Walshe, C., Preston, N., Dunleavy, L., Bradshaw, A., Bajwah, S., Higginson, I. J., Fraser, L. K., & on behalf of the CovPall Study Team. (2022). Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall). Journal of palliative medicine, 25(3), 465-471. https://doi.org/10.1089/jpm.2021.0315

Objectives: To identify factors associated with palliative care services being busier during Covid-19. Methods: Cross-sectional online survey of UK palliative care services (April to July 2020) (CovPall). Ethical approval was received from King's Col... Read More about Change in Activity of Palliative Care Services during the Covid-19 Pandemic: A Multinational Survey (CovPall).

Using and implementing individual-level outcome measures in palliative care settings: a reflective commentary (2021)
Journal Article
Bradshaw, A., Pearson, M., & Murtagh, F. (2021). Using and implementing individual-level outcome measures in palliative care settings: a reflective commentary. Rivista italiana di cure palliative, 23(4), 197-204. https://doi.org/10.1726/3702.36924

Individual-level outcome measures are an important aspect of palliative care. They are tools that can drive high-quality, person-centred care through providing healthcare professionals and services with valuable information about the patients we see... Read More about Using and implementing individual-level outcome measures in palliative care settings: a reflective commentary.

Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study (2021)
Journal Article
Bajwah, S., Koffman, J., Hussain, J., Bradshaw, A., Hocaoglu, M. B., Fraser, L. K., Oluyase, A., Allwin, C., Dunleavy, L., Preston, N., Cripps, R., Maddocks, M., Sleeman, K. E., Higginson, I. J., Walshe, C., & Murtagh, F. E. M. (2021). Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study. BMJ Supportive & Palliative Care, bmjspcare-2021-003083. https://doi.org/10.1136/bmjspcare-2021-003083

Objectives: To develop insights into response of palliative care services caring for people from ethnic minority groups during COVID-19.
Methods: Cross-sectional online survey of UK palliative care services response to COVID-19. Quantitative data w... Read More about Specialist palliative care services response to ethnic minority groups with COVID-19: equal but inequitable—an observational study.

Prohibit, Protect, or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services During the COVID-19 Pandemic. A Multinational Survey (Covpall) (2021)
Journal Article
Walshe, C., Garner, I., Dunleavy, L., Preston, N., Bradshaw, A., Cripps, R. L., Bajwah, S., Sleeman, K. E., Hocaoglu, M., Maddocks, M., Murtagh, F. E., Oluyase, A. O., Fraser, L. K., & Higginson, I. J. (2022). Prohibit, Protect, or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services During the COVID-19 Pandemic. A Multinational Survey (Covpall). International Journal of Health Policy and Management, 11(10), 2146-2154. https://doi.org/10.34172/ijhpm.2021.128

Background: Volunteers are common within palliative care services, and provide support that enhances care quality. The support they provided, and any role changes, during the coronavirus disease 2019 (COVID-19) pandemic are unknown. The aim of this s... Read More about Prohibit, Protect, or Adapt? The Changing Role of Volunteers in Palliative and Hospice Care Services During the COVID-19 Pandemic. A Multinational Survey (Covpall).

Implementing person-centred outcome measures (PCOMs) into routine palliative care: A protocol for a mixed-methods process evaluation of the RESOLVE PCOM Implementation Strategy (2021)
Journal Article
Bradshaw, A., Santarelli, M., Khamis, A. M., Sartain, K., Johnson, M., Boland, J., Pearson, M., & Murtagh, F. E. (2021). Implementing person-centred outcome measures (PCOMs) into routine palliative care: A protocol for a mixed-methods process evaluation of the RESOLVE PCOM Implementation Strategy. BMJ open, 11(9), Article e051904. https://doi.org/10.1136/bmjopen-2021-051904

Introduction Person-centred outcome measures improve quality of care and patient outcomes but are used inconsistently in palliative care practice. To address this implementation gap, we developed the 'RESOLVE Implementation Strategy'. This protocol d... Read More about Implementing person-centred outcome measures (PCOMs) into routine palliative care: A protocol for a mixed-methods process evaluation of the RESOLVE PCOM Implementation Strategy.

Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study (2021)
Journal Article
Guo, P., Pinto, C., Edwards, B., Pask, S., Firth, A., O’Brien, S., & Murtagh, F. E. (2021). Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study. Palliative medicine, 026921632110433. https://doi.org/10.1177/02692163211043371

Background: Transitions between care settings (hospice, hospital and community) can be challenging for patients and family caregivers and are often an under-researched area of health care, including palliative care. Aim: To explore the experience of... Read More about Experiences of transitioning between settings of care from the perspectives of patients with advanced illness receiving specialist palliative care and their family caregivers: A qualitative interview study.

Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations (2021)
Journal Article
O’Donnell, S. B., Bone, A. E., Finucane, A. M., McAleese, J., Higginson, I. J., Barclay, S., Sleeman, K. E., & Murtagh, F. E. (2021). Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations. Palliative medicine, 35(10), 1975-1984. https://doi.org/10.1177/02692163211040981

Background: Understanding patterns of mortality and place of death during the COVID-19 pandemic is important to help provide appropriate services and resources. Aims: To analyse patterns of mortality including place of death in the United Kingdom (UK... Read More about Changes in mortality patterns and place of death during the COVID-19 pandemic: A descriptive analysis of mortality data across four nations.

End-stage kidney disease (2021)
Book Chapter
Murtagh, F. (2021). End-stage kidney disease. In N. I. Cherny, M. T. Fallon, S. Kaasa, R. K. Portenoy, & D. C. Currow (Eds.), Oxford Textbook of Palliative Medicine (1010-1019). (6th ed.). Oxford University Press. https://doi.org/10.1093/med/9780198821328.003.0095

End-stage kidney disease accounts for 1–2% of all deaths. With ageing of the population, this proportion will grow steadily over the coming years. Symptom burden in end-stage kidney disease exceeds advanced cancer, with added renal-specific symptoms,... Read More about End-stage kidney disease.

Health professionals’ perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study (2021)
Journal Article
Fairlamb, H. J., & Murtagh, F. E. (2021). Health professionals’ perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study. BMC Palliative Care, 20(1), Article 103. https://doi.org/10.1186/s12904-021-00805-3

Background: End-stage cardiac and respiratory diseases are common in the UK. People with these end-stage conditions experience similar, or even worse, symptomatic suffering to cancer patients but are less likely to receive specialist palliative care... Read More about Health professionals’ perceptions of palliative care for end-stage cardiac and respiratory conditions: a qualitative interview study.

Improving caring quality for people with dementia in nursing homes using IPOS-Dem: A stepped-wedge cluster randomized controlled trial protocol (2021)
Journal Article
Spichiger, F., Koppitz, A. L., De Wolf-Linder, S., Murtagh, F. E., Volken, T., & Larkin, P. (in press). Improving caring quality for people with dementia in nursing homes using IPOS-Dem: A stepped-wedge cluster randomized controlled trial protocol. Journal of advanced nursing, https://doi.org/10.1111/jan.14953

Aims: We aim to evaluate the effectiveness of the Integrated Palliative Care Outcome Scale for people with dementia-based case studies to improve the caring quality for people with dementia in nursing homes by frontline staff and family members. Back... Read More about Improving caring quality for people with dementia in nursing homes using IPOS-Dem: A stepped-wedge cluster randomized controlled trial protocol.

Virtual models of care for people with palliative care needs living in their own home: A systematic meta-review and narrative synthesis (2021)
Journal Article
Disalvo, D., Agar, M., Caplan, G., Murtagh, F. E., Luckett, T., Heneka, N., Hickman, L., Kinchin, I., Trethewie, S., Sheehan, C., Urban, K., Cohen, J., Harlum, J., Long, B., Parker, T., Schaefer, I., & Phillips, J. (in press). Virtual models of care for people with palliative care needs living in their own home: A systematic meta-review and narrative synthesis. Palliative medicine, https://doi.org/10.1177/02692163211024451

Background: Access to palliative care in the community enables people to live in their preferred place of care, which is often home. Community palliative care services struggle to provide timely 24-h services to patients and family. This has resulted... Read More about Virtual models of care for people with palliative care needs living in their own home: A systematic meta-review and narrative synthesis.

Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services (2021)
Journal Article
Bradshaw, A., Dunleavy, L., Walshe, C., Preston, N., Cripps, R. L., Hocaoglu, M., Bajwah, S., Maddocks, M., Oluyase, A. O., Sleeman, K., Higginson, I. J., Fraser, L., & Murtagh, F. (2021). Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services. Palliative medicine, 35(7), 1225-1237. https://doi.org/10.1177/02692163211017387

Background: Specialist palliative care services play an important role in conducting advance care planning during COVID-19. Little is known about the challenges to advance care planning in this context, or the changes services made to adapt. Aim: Des... Read More about Understanding and addressing challenges for advance care planning in the COVID-19 pandemic: An analysis of the UK CovPall survey data from specialist palliative care services.

Palliative care for children and young people with stage 5 chronic kidney disease (2021)
Journal Article
Craig, F., Henderson, E. M., Patel, B., Murtagh, F. E., & Bluebond-Langner, M. (2021). Palliative care for children and young people with stage 5 chronic kidney disease. Pediatric Nephrology, https://doi.org/10.1007/s00467-021-05056-1

Death from stage 5 chronic kidney disease (CKD 5) in childhood or adolescence is rare, but something that all paediatric renal physicians and most paediatricians will encounter. In this paper, we present the literature on three key areas of palliativ... Read More about Palliative care for children and young people with stage 5 chronic kidney disease.

Implantable cardioverter defibrillator devices: when, how and who should discuss deactivation with patients: a systematic literature review (2021)
Journal Article
Freemantle, M., & Murtagh, F. (in press). Implantable cardioverter defibrillator devices: when, how and who should discuss deactivation with patients: a systematic literature review. BMJ supportive & palliative care, Article 2021-002894. https://doi.org/10.1136/bmjspcare-2021-002894

Background: Implantable cardioverter defibrillators (ICDs) are used to treat life-threatening cardiac arrhythmias and prevent sudden cardiac arrest. As recipients age they may develop greater risk of dying as a result of progressive multimorbidity ra... Read More about Implantable cardioverter defibrillator devices: when, how and who should discuss deactivation with patients: a systematic literature review.

‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall) (2021)
Journal Article
Dunleavy, L., Preston, N., Bajwah, S., Bradshaw, A., Cripps, R., Fraser, L. K., Maddocks, M., Hocaoglu, M., Murtagh, F. E., Oluyase, A. O., Sleeman, K. E., Higginson, I. J., & Walshe, C. (2021). ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall). Palliative medicine, 35(5), 814-829. https://doi.org/10.1177/02692163211000660

Background:
Specialist palliative care services have a key role in a whole system response to COVID-19, a disease caused by the SARS-CoV-2 virus. There is a need to understand service response to share good practice and prepare for future care.

A... Read More about ‘Necessity is the mother of invention’: Specialist palliative care service innovation and practice change in response to COVID-19. Results from a multinational survey (CovPall).

Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality (2021)
Journal Article
Harding, R., Bristowe, K., Coombes, L., Murtagh, F. E., Chambers, L., Bluebond-Langner, M., Downing, J., Fraser, L. K., Aworinde, J., & Ellis-Smith, C. (in press). Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, https://doi.org/10.1007/s11136-021-02814-4

Introduction: Self-report is the gold standard for measuring children’s health-related outcomes. Design of such measures is complex and challenging. This review aims to systematically appraise the evidence on recall period, response scale format, mod... Read More about Enhancing validity, reliability and participation in self-reported health outcome measurement for children and young people: a systematic review of recall period, response scale format, and administration modality.

All Outputs (151)