We would like to acknowledge the major contributions of participants in all workstreams; we especially thank those with advanced illness and their families, who were often highly committed to contributing whatever they could despite their advancing illness. We also thank all the staff at participating sites who worked hard to ensure that the data collection within this programme was possible, including the often overlooked ‘back office’ staff; administrators, finance officers, accountants.
Contributions of authors
Fliss EM Murtagh (https://orcid.org/0000-0003-1289-3726) was the joint lead investigator. She wrote the study protocols, analysed the quantitative data, undertook the qualitative data analyses and drafted the report manuscript. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content. Fliss Murtagh is the guarantor of the data.
Ping Guo (https://orcid.org/0000-0003-0979-7047) wrote the study protocols, liaised with sites, undertook data collection and undertook the qualitative data analyses. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Alice M Firth (https://orcid.org/0000-0003-0726-0502) had critical input in the study protocols, liaised with sites, undertook data collection and undertook the qualitative data analyses. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Ka Man Yip (https://orcid.org/0000-0002-1577-3431) had critical input in the study protocols and analysed the quantitative data. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Christina Ramsenthaler (https://orcid.org/0000-0002-9996-1818) had critical input in the study protocols and analysed the quantitative data. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Abdel Douiri (https://orcid.org/0000-0002-4354-4433) had critical input in the study protocols and analysed the quantitative data. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Cathryn Pinto (https://orcid.org/0000-0001-7607-7192) had critical input in the study protocols, liaised with sites, undertook data collection and undertook the qualitative data analyses. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Sophie Pask (https://orcid.org/0000-0001-6152-1940) had critical input in the study protocols, liaised with sites, undertook data collection and undertook the qualitative data analyses. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Mendwas Dzingina (https://orcid.org/0000-0002-6237-9250) had critical input in the study protocols and analysed the quantitative data. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Joanna M Davies (https://orcid.org/0000-0002-6375-0023) had critical input in the study protocols and analysed the quantitative data. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Suzanne O’Brien (https://orcid.org/0000-0001-8267-0881) had critical input in the study protocols, liaised with sites, undertook data collection and undertook the qualitative data analyses. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Beth Edwards (https://orcid.org/0000-0001-7742-4432) had critical input in the study protocols, liaised with sites, undertook data collection and undertook the qualitative data analyses. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Esther I Groeneveld (https://orcid.org/0000-0003-4367-8543) wrote the study protocols, liaised with sites and undertook data collection. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Mevhibe Hocaoglu (https://orcid.org/0000-0003-1417-7117) had critical input in the study protocols, liaised with sites and undertook data collection. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Claudia Bausewein (https://orcid.org/0000-0002-0958-3041) had critical input in the study protocols and analysed the quantitative data. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Irene J Higginson (https://orcid.org/0000-0002-3687-1313) was the joint lead investigator and wrote the study protocols. They contributed to the analysis plan and provided critical revision of the manuscript for important intellectual content.
Publications
Collins ES, Witt J, Bausewein C, Daveson BA, Higginson IJ, Murtagh FE. A systematic review of the use of the Palliative care Outcome Scale and the Support Team Assessment Schedule in palliative care. J Pain Symptom Manage 2015;50:842–53. https://doi.org/10.1016/j.jpainsymman.2015.07.015
Etkind SN, Daveson BA, Kwok W, Witt J, Bausewein C, Higginson IJ, et al. Capture, transfer and feedback of patient-centred outcomes data in palliative care populations: does it make a difference? A systematic review. J Pain Symptom Manage 2015;49:611–24. https://doi.org/10.1016/j.jpainsymman.2014.07.010
Schildmann EK, Groeneveld I, Denzel J, Brown A, Bernhardt F, Bailey K, et al. Discovering the hidden benefits of cognitive interviewing in two languages: the first phase of a validation study of the Integrated Palliative Outcome Scale (IPOS). Palliat Med 2016;30:599–610. https://doi.org/10.1177/0269216315608348
Etkind SN, Bristowe K, Bailey K, Selman LE, Murtagh FE. How does uncertainty shape patient experience in advanced illness? A secondary analysis of qualitative data. Palliat Med 2017;31:171–80. https://doi.org/10.1177/0269216316647610
Groeneveld EI, Cassel JB, Bausewein C, Csikos A, Krajnik M, Ryan K, et al. Funding models in palliative care: lessons from international experience. Palliat Med 2017;31:296–305. https://doi.org/10.1177%2F0269216316689015
Guo P, Dzingina M, Firth AM, Davies JM, Douiri A, O’Brien SM, et al. Development and validation of a casemix classification to best predict costs of palliative care provision across inpatient, community and outpatient settings in the UK: a study protocol. BMJ Open 2018;8:e020071. https://doi.org/10.1136/bmjopen-2017-020071
Mather H, Guo P, Firth AM, Davies JM, Sykes N, Landon A, et al. Phase of illness in palliative care: cross-sectional analysis of clinical data from community, hospital and hospice patients. Palliat Med 2018;32:404–12. https://doi.org/10.1177/0269216317727157
Pask S, Pinto C, Bristowe K, van Vliet L, Nicholson C, Evans CJ, et al. A framework for complexity in palliative care: a qualitative study with patients, family carers and professionals. Palliat Med 2018;32:1078–90. https://doi.org/10.1177/0269216318757622
Pinto C, Bristowe K, Witt J, Davies JM, de Wolf-Linder S, Dawkins M, et al. Perspectives of patients, family caregivers and health professionals on the use of outcome measures in palliative care and lessons for implementation: a multi-method qualitative study. Ann Palliat Med 2018;7(Suppl. 3):S137–50. https://doi.org/10.21037/apm.2018.09.02
Murtagh FEM, Ramsenthaler C, Firth A, Groeneveld EI, Lovell N, Simon ST, et al. A brief, patient- and proxy-reported outcome measure in advanced illness: validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliat Med 2019;33:1045–57. https://doi.org/10.1177/0269216319854264
de Wolf-Linder S, Dawkins M, Wicks F, Pask S, Eagar K, Evans CJ, et al. Which outcome domains are important in palliative care and when? An international expert consensus workshop, using the nominal group technique. Palliat Med 2019;33:1058–68. https://doi.org/10.1177/0269216319854154
Firth AM, O’Brien SM, Guo P, Seymour J, Richardson H, Bridges C, et al. Establishing key criteria to define and compare models of specialist palliative care: a mixed-methods study using qualitative interviews and Delphi survey. Palliat Med 2019;33:1114–24. https://doi.org/10.1177/0269216319858237
Pinto C, Firth AM, Groeneveld EI, Guo P, Sykes N, Murtagh FE. Patients’ views on care and their association with outcomes in palliative care. Palliat Med 2019;33:467–9. https://doi.org/10.1177/0269216319831383
Guo P, Pinto C, Edwards B, Pask S, Firth A, O’Brien S, Murtagh FEM. 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. Palliat Med 2022;36:124–34. https://doi.org/10.1177/02692163211043371
Murtagh FEM, Firth A, Guo P, Man Yip K, Ramsenthaler C, Douiri A, et al. Developing a casemix classification for specialist palliative care: a multi-centre cohort study to develop a multi-variable prediction model for the cost of specialist palliative care using classification and regression tree analysis. (submitted and review comments received.)
Data-sharing statement
Access to anonymised data may be granted following review. In particular, applications for the use of workstream 3 and workstream 4 data will be considered on a case-by-case basis. All requests for data access should be addressed to the corresponding author, Fliss Murtagh, at fliss.murtagh@hyms.ac.uk.
Disclaimers
This report presents independent research funded by the National Institute for Health and Care Research (NIHR). 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, CCF, PGfAR or the Department of Health and Social Care. If there are verbatim quotations included in this publication the views and opinions expressed by the interviewees are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the PGfAR programme or the Department of Health and Social Care.