Contributions of authors

Marlise Poolman (https://orcid.org/0000-0002-2837-363X) (Clinical Senior Lecturer in Palliative Medicine) was involved in the conception of the study and the design and development of the intervention. She provided SPC clinical expertise (Wales). As co-chief investigator, she had overall responsibility for the co-ordination and delivery of the study. She fulfilled PI duties for BCUHB. She contributed to all outputs from the study, drafted and edited the final report, and is leading the dissemination of results at national and international conferences.

Jessica Roberts (https://orcid.org/0000-0002-3271-1814) (Trial Manager and Health Services Research) assisted with the design practicalities and research ethics applications. She oversaw the co-ordination and delivery of the study including trial set-up and training. She was closely involved in analysis and interpretation. She contributed to all outputs from the study, revising it and providing detailed feedback.

Stella Wright (https://orcid.org/0000-0001-9634-6273) (Trial Manager and Research and Development Officer) oversaw the co-ordination and delivery of the study (maternity leave cover). She was involved in report writing.

Annie Hendry (https://orcid.org/0000-0002-2112-1368) (Research Officer and Qualitative Research) has contributed to matters relating to the embedded qualitative study, and was involved in the conduct, analysis, interpretation and report writing for Chapters 5 and 6. She collected data for the DCE as part of the qualitative interviews.

Nia Goulden (https://orcid.org/0000-0001-6511-3987) (Trial Statistician) was the trial statistician. She provided analysis of the data and contributed to report writing of Chapter 4.

Emily AF Holmes (https://orcid.org/0000-0002-0479-5336) (Research Officer and Health Economics) was involved in the design, conduct, analysis and interpretation of the DCE and health economic outcomes elements. She led on the report writing for Chapter 7.

Anthony Byrne (https://orcid.org/0000-0002-1413-1496) (Consultant in Palliative Medicine) fulfilled PI duties for CVUHB. He provided SPC clinical expertise (Wales) and illuminated Welsh policy context. He assisted with pilot trial design. He gave detailed feedback on the final report.

Paul Perkins (https://orcid.org/0000-0002-6848-967X) (Consultant in Palliative Medicine) fulfilled PI duties for GCS. He provided SPC clinical expertise (England). He assisted with pilot trial design. He gave detailed feedback on the final report.

Zoe Hoare (https://orcid.org/0000-0003-1803-5482) (Principal Statistician), as Clinical Trials Unit lead, advised on matters relating to trial design, including power and sample size calculations and randomisation. She oversaw analysis of the data and contributed to drafting the final report, revising it and providing detailed feedback.

Annmarie Nelson (https://orcid.org/0000-0002-6075-8425) (Marie Curie Professor of Supportive and Palliative Care) was qualitative lead and oversaw the design, conduct, analysis and interpretation of the embedded qualitative study. She provided public contribution expertise. She provided oversight of Chapters 5 and 6 of the final report.

Julia Hiscock (https://orcid.org/0000-0002-8963-2981) (Research Fellow and Qualitative Research) assisted with the design, conduct, analysis and interpretation of the embedded qualitative study. She supported the qualitative lead and had oversight of the qualitative researcher. She advised on sociological aspects and led on public contribution. She contributed to drafting the final report, revising it and providing detailed feedback.

Dyfrig Hughes (https://orcid.org/0000-0001-8247-7459) (Professor of Pharmacoeconomics) was the health economics lead and contributed to matters relating to economic issues. He oversaw the design, conduct, analysis and interpretation of the DCE and health economic outcomes elements. He provided oversight of Chapter 7 of the final report.

Julie O’Connor (Public Contributor) provided valuable insights informing the design and conduct of the study, as well as contributing to interpretation of results. She assisted the drafting of the Plain English summary and supported dissemination at national conferences.

Betty Foster (Public Contributor) provided valuable insights informing the design and conduct of the study, as well as contributing to interpretation of results. She assisted the drafting of the Plain English summary.

Liz Reymond (https://orcid.org/0000-0001-6617-4618) (Professor of Palliative Care) was involved in the design of the pilot RCT, sharing expertise on outcome measures, medicines management and the intervention being tested. She provided SPC clinical and research expertise (Australia). She commented on the final report.

Sue Healy (https://orcid.org/0000-0002-9021-5835) (SPC Nurse Manager) was involved in the design of the pilot RCT as she had direct clinical experience of implementing and supporting the intervention being tested. She provided SPC clinical expertise (Australia).

Penney Lewis (https://orcid.org/0000-0002-7217-5884) (Professor of Law) advised on and drafted the UK legal framework for the intervention being tested. She illuminated ethics issues, including consent procedures. She commented on the final report.

Bee Wee (https://orcid.org/0000-0002-7714-0349) (Professor of Palliative Care) assisted with pilot RCT design. She provided SPC clinical expertise (England) and illuminated UK policy context. She advised on ethics issues including consent mechanism and gave detailed feedback on the final report.

Rosalynde Johnstone (https://orcid.org/0000-0003-1642-5356) (Project Manager and Last-Days-of-Life Care Project) provided guidance on outcome measures and Welsh policy context. She gave detailed feedback on the final report.

Rossela Roberts (https://orcid.org/0000-0003-1775-0986) (Clinical Governance Officer) advised on ethics issues including consent mechanism, as well as research network support.

Anne Parkinson (https://orcid.org/0000-0003-4495-5127) (SPC Nurse) supported the study with SPC clinical and recruitment expertise (England). She commented on the final report.

Sian Roberts (https://orcid.org/0000-0002-4883-4122) (Research and Development Pharmacist) provided medicines management advice.

Clare Wilkinson (https://orcid.org/0000-0003-0378-8078) (Professor of General Practice) was involved in the conception of the study and the design and development of the intervention. She provided UK primary care clinical expertise and advised on matters relating to RCT methodology. As senior co-chief investigator, she had overall responsibility for the co-ordination and delivery of the study. She contributed to all outputs from the study, revising it and providing detailed feedback.

All authors made substantial contributions to conception and design and/or to acquisition of data and/or to analysis and interpretation of data. All authors read and approved the final manuscript.

Publication

Poolman M, Roberts J, Byrne A, Perkins P, Hoare Z, Nelson A, et al. CARer-ADministration of as-needed subcutaneous medication for breakthrough symptoms in homebased dying patients (CARiAD): study protocol for a UK-based open randomised pilot trial. Trials 2019;20:105.

Data-sharing statement

All data requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following review.

Patient data

This work uses data provided by patients and collected by the NHS as part of their care and support. Using patient data is vital to improve health and care for everyone. There is huge potential to make better use of information from people’s patient records, to understand more about disease, develop new treatments, monitor safety, and plan NHS services. Patient data should be kept safe and secure, to protect everyone’s privacy, and it’s important that there are safeguards to make sure that it is stored and used responsibly. Everyone should be able to find out about how patient data are used. #datasaveslives You can find out more about the background to this citation here: https://understandingpatientdata.org.uk/data-citation.

Disclaimers

This report presents independent research funded by the National Institute for Health 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, NETSCC, the PHR programme 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, NETSCC, the PHR programme or the Department of Health and Social Care.