We would like to sincerely thank all the infants, children, young people, parents, guardians and families who took part in the PERMIT study. Without their support, generosity and dedication to this study and to informing future research, during an extremely difficult and challenging period of their lives, the PERMIT study would not have succeeded.
In addition, we would like to wholeheartedly thank all of the healthcare practitioners, research staff and managers across all the NHS trusts, higher-education authorities and NIHR organisations involved in PERMIT. They have worked tirelessly to set up and deliver safely all the phases of the PERMIT study through the most exceptional times experienced by the NHS as a result of the COVID pandemic.
Below we list key members of those teams.
Contributions of authors
Barnaby R Scholefield (https://orcid.org/0000-0002-6198-4985) (Chief Investigator, NIHR Clinician Scientist and paediatric intensive care (PICU) physician, University of Birmingham) conceived the study, original grant application and protocols and led Phases 1 and 4, and co-led Phase 3 of PERMIT. Wrote the first draft final report, had full access to all the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Julie C Menzies (https://orcid.org/0000-0003-2080-3364) (Nurse Researcher, PICU and NIHR 70@70 Senior Nurse Research Leader, Birmingham Women’s and Children’s NHS Foundation Trust) led the PPIE throughout the study, contributed to the analysis of the Phase 1 survey, contributed to the research delivery of Phase 3 and led the Phase 3 process evaluation. Critically reviewed, analysed and edited full report and was a co-investigator.
Jennifer McAnuff (https://orcid.org/0000-0002-1636-0049) (Research Fellow, Northumbria University and paediatric occupational therapist) co-designed and led the Phase 2 intervention development study, led all Phase 2 data collection and analysis, co-wrote the ethics application for Phase 3, led the write-up of Chapter 4 and was a co-investigator.
Jacqueline Y Thompson (https://orcid.org/0000-0002-9775-361X) (Research Fellow, University of Birmingham) trial co-ordinator and data manager for PERMIT observational study, designed and led the scoping review, co-ordinated and analysed Phase 1 survey. Database designer and manager Phase 1 observational and Phase 3 feasibility study. Wrote the first drafts of Chapters 1 and 2.
Joseph C Manning (https://orcid.org/0000-0002-6077-4169) (NIHR ICA Clinical Lecturer, Clinical Associate Professor in CYP and Families Nursing, University of Nottingham) critically reviewed, analysed and edited full report, member of the Phase 1 and Phase 3 study core-development team and was a co-investigator.
Richard G Feltbower (https://orcid.org/0000-0002-1728-9408) (Principal Investigator for PICANet, Senior Epidemiology, University of Leeds) critically reviewed, analysed and edited full report, statistical expertise and was a co-investigator.
Michelle Geary (https://orcid.org/0000-0002-2092-6113) (Divisional therapy lead and Specialist children’s physiotherapist within neurology and neurorehabilitation Southampton children’s Hospital) critically reviewed, analysed and edited full report and was a co-investigator.
Sophie Lockley, Patient and Public Involvement and Engagement (PPIE) representative and was a co-applicant.
Kevin P Morris (https://orcid.org/0000-0001-8911-6306) (Consultant in Paediatric Intensive Care, Birmingham Women’s and Children’s NHS Foundation Trust) critically reviewed, analysed and edited full report and was a co-investigator.
David Moore (https://orcid.org/0000-0002-4163-4080) (Associate Professor of Evidence Synthesis, University of Birmingham) provided methodological guidance and contributed to the literature review and was a co-investigator.
Nazima Pathan (https://orcid.org/0000-0001-7656-9453) (Consultant in Paediatric Intensive Care, Addenbrookes, University of Cambridge) critically reviewed, analysed and edited full report and was a co-investigator.
Fenella Kirkham (https://orcid.org/0000-0002-2443-7958) (Professor of Paediatric Neurology, UCL and Southampton children’s Hospital), co-lead for Phase 3, co-wrote the ethics application for Phase 3, critically reviewed, analysed and edited full report and was a co-investigator.
Robert Forsyth (https://orcid.org/0000-0002-5657-4180) (Consultant in Paediatric Neurology, University of Newcastle), co-lead for Phase 2, critically reviewed, analysed and edited full report and was a co-investigator.
Tim Rapley (https://orcid.org/0000-0003-4836-4279) (Professor of Applied Healthcare Research, Northumbria University), co-lead for Phase 2, provided expert guidance on normative process theory analysis in Phase 3. Critically reviewed, analysed and edited full report and was a co-investigator.
Additional acknowledgement
We would like to thank all members of the Trial Steering Committee and the Data Monitoring and Ethics Committee for their support and guidance of the PERMIT study (see Appendix 1).
Ms Faaria Hussain (Project Manager, University or Birmingham) lead project manager for PERMIT study. Darcy (PPIE representative) for her support and invaluable input to all the PPIE elements with her mum, Sophie Lockley (PPIE co-applicant). Ms Francessca Ryde and Ms Emily Brush (BMedSci students, University of Birmingham) for their development and piloting of the Phase 1b survey. Dr James Martin (Biostatistician, University of Birmingham) and Dr Hari Krishnan (Consultant in Paediatric Intensive Care, Birmingham Women’s and Children’s NHS Foundation Trust) for statistical analysis support in Phase 1c observational study and Phase 3 feasibility study. Dr Laura Cutler and Dr Olivia Craw (Research Assistants, University of Newcastle) for the conduct of the Phase 2 manual development and Hari Krishnan Statistical support Phases 1 and 3. Mrs Hannah Child, Ms Natalie Hemming and Mr Louis Skevington-Postles (physiotherapists) for their expert guidance and input into the Phase 2 PERMIT manual development. Ms Natalie Read (Research Coordinator, Birmingham Women and Children’s Hospital NHS Foundation Trust) Phase 3 qualitative research and PERIT debriefs. Mrs Hannah Child for her contribution localising education material and responding to site training requirements during Phase 3. Dr Rebecca Woolley and Prof Karla Hemmings (University of Birmingham Clinical Trials Unit) for methodological support for the future trial design Phase 4 PERMIT. Dr Sapna Kudchadkar (Johns Hopkins, Baltimore, USA) and Dr Karen Choong (McMaster University, Ontario, Canada), international experts in paediatric ERM who provided mentorship, review and guidance to the chief investigator and PERMIT team. Paediatric Critical Care Society Study Group (PCCS-SG) members and members of the Paediatric Intensive Care Units and Principal Investigators for their contribution to the development of the PERMIT study. Mr Martin Simpson Scott (NIHR HTA Research programme manager) for his guidance and support throughout the whole PERMIT study.
Ethics committee
We offer our thanks to the following ethics committees for their review of the individual phases of the PERMIT study:
- Phase 1b survey: University of Birmingham, 5 February 2019: Ref: BMS_1819_03.
- Phase 1c observational study: REC approval: 2 September 2019. East of Scotland Research Ethics Service. HRA ref: 19/ES/0102.
- Phase 2 manual development workshop: healthcare professionals: Newcastle University, 1 September 2019: Ref 14224/2018. Parents, children and young people: REC approval: 28 February 2020 19/LO/1987 (substudy stopped because of COVID pandemic).
- Phase 3 feasibility study: REC approval: 26 April 2021. Berkshire Research Ethics Service. HRA ref: 21/SC/0127.
We thank and acknowledge the support of the following organisations, representatives and principal investigators who participated in PERMIT study:
Phase 1b survey
Addenbrooke’s Cambridge, Dr Nazima Pathan; Alder Hey Children’s NHS Foundation Trust, Liverpool, Dr Petr Jirasek; Birmingham Women and Children’s Hospital NHS Foundation Trust, Dr Barnaby Scholefield; Bristol Royal Hospital for Children, Kate Baptiste; Evelina London Children’s Hospital, Dr Miriam Fine-Goulden; Freeman Hospital, Newcastle upon Tyne Hospitals NHS Foundation Trust, Dr Deborah Cross; GOSH CICU, Great Ormond Street Hospital for Children NHS Foundation Trust, Emma Shkurka; GOSH PICU, Great Ormond Street Hospital for Children NHS Foundation Trust, Dr Peter Sidgwick; Great North Children’s Hospital, Newcastle, Dr Rachel Agbeko; Kings College Hospital NHS Foundation Trust, Dr Bogdana Zoica; Leeds Teaching Hospitals NHS Trust, St. James’s University Hospital, Dr Sian Cooper; Noah’s Ark Children’s Hospital for Wales, Dr Siva Oruganti; Nottingham Children’s Hospital, Queen’s Medical Centre, Dr Georgina Harlow; Oxford University Hospitals, Dr Deirdre O’Shea; Royal Belfast Hospital for sick children, located in Royal Victoria Hospital, Dr Julie Richardson; Royal Hospital for Children Glasgow, Dr Richard Levin; Royal Hospital for Sick Children in Edinburgh, Dr Tsz Yan and Dr Milly Lo; Royal Manchester Children’s Hospital, Dr Ravishankar Nagaraj; Sheffield Children’s Hospital NHS Foundation Trust, Dr Rum Thomas; Southampton Children’s Hospital, Katy Morton; St Georges Hospital, London, Dr Soumendu Manna; St Mary’s Hospital, London, Dr Tom Bycroft; University Hospital Leicester, Dr Sanjiv Nichani; Glenfield Hospital, Dr Sanjiv Nichani; University Hospital North Midlands, Dr Kanaris Constantinos; South Tees Hospitals NHS Foundation Trust.
Phase 1c observational study
Addenbrookes Hospital, Cambridge, Dr Nazima Pathan; Alder Hey Children’s NHS Foundation Trust, Dr Kent Thorburn; Birmingham Women and Children’s Hospital NHS Foundation Trust, Dr Julie Menzies; Great Ormond Street CICU, Dr Aparna Hoskote and Great Ormond Street Hospital PICU, Dr Sophie Skellett; Nottingham Children’s Hospital, Dr Patrick Davies; Oxford University Hospitals, Dr James Weitz, Dr Avishay Sarfatti; Royal Hospital for Children Glasgow, Dr Richard Levin; Royal Manchester Children’s Dr Rachel Barber and Dr Ravishankar Nagaraj; Southampton Children’s Hospital, Dr John Pappachan; St Mary’s Hospital, Imperial College Healthcare NHS Trust, Dr David Inwald; University Hospital Leicester. Dr Simon Robinson; Glenfield Hospital, Leicester, Dr Peter Barry; Leeds Teaching Hospitals NHS Trust, Dr Sian Cooper; Royal Hospital for Sick Children, Edinburgh, Dr Milly Lo.
Phase 3 feasibility study
Kings College Hospital, London: Bogdana Zoica (PI), Louis Skevington-Postles (Co-PI), Daleep Meena, Christina Balnta, Pam D’Silva, Kerry Murphy, Tamsin Jones, Stacy Rice. Southampton Children’s Hospital: Dr Kim Sykes (PI), Jessica Mason, Hannah Clarke, Amber Cook, John Pappachan, Donna Austin, Nicola Etherington, Tracey Curtis, Hannah White, Caitlin Oxford, Verity Penner, Jenny Pond. Birmingham Women and Children’s Hospital NHS Foundation Trust: Julie Menzies (Co-PI), Will Tremlett (Co-PI), Natalie Read, Helen Winmill, Clare Burt, Hannah Child, Kirsty Stanley, Katie Ingram, Lydia Ashton, Lizzie Greensall, Navjyot Jabbak, Ben Harris, Harriet Payne, Sarah Bundy, Natalie Hemming, Chelsea Watson, Chiedza Chikurunhe.
Acknowledging the use of 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 they are 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.
Data-sharing statement
All data requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following review.
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, the HTA 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, the HTA programme or the Department of Health and Social Care.