Allan Colver is Professor of Community Child Health at Newcastle University and a Consultant Paediatrician. He was the grant holder and led the programme of research. He led WP 3.3 and was directly involved in all other WPs except 2.2 and 2.3. He drafted the final report and is responsible for the final version and submission to NIHR. He is the corresponding author and guarantor of the work.
Tim Rapley was Senior Lecturer in Medical Sociology at Newcastle University and is now Professor of Applied Health Care Research at Northumbria University. He was a co-applicant. He led WP 2.2, co-led WP 3.1 and was directly involved in WP 1.1. In WPs 2.2 and 3.1, this work involved designing the qualitative work, supervising research assistants and analysing the transcripts of qualitative data. He
assisted with many aspects of the engagement of young people in the programme’s work. He co-designed
the DAH toolkit. He contributed detailed adjustments to the draft report and approved the final version. Jeremy R Parr is Professor of Paediatric Neurodisability at Newcastle University and a consultant paediatrician. He was a co-applicant. He was directly involved in WPs 1.3, 2.1, 2.2 and 3.1. This work involved co-designing these quantitative and qualitative studies, contributing to supervision of research assistants, lead contacts with clinicians for the Q-sort study, overseeing recruitment of people with diabetes mellitus for the longitudinal study, assisting with design of the DCE, and co-designing the DAH toolkit. He contributed detailed adjustments to the draft report and approved the final version.
Helen McConachie is Professor of Child Clinical Psychology at Newcastle University. She was a co-applicant. She led WP 2.1. This work included involvement in the design of the original programme, co-design of the longitudinal study, arranging training of the research assistants, monitoring data collection and completeness, and advising on data analysis. She contributed detailed adjustments to the draft report and approved the final version.
Gail Dovey-Pearce is a Consultant Clinical Psychologist at Northumbria Healthcare NHS Foundation Trust. She was a co-applicant. She led WPs 1.1 and 1.2 and was directly involved in WPs 2.1 and 3.1. Her work involved leading on the engagement and involvement of young people, including setting up and running UP, supervising the collection of longitudinal data across two sites, and facilitating the qualitative interviews at one site. She contributed detailed adjustments to the draft report and approved the final version.
Ann Le Couteur is Professor of Child and Adolescent Psychiatry at Newcastle University and a consultant child and adolescent psychiatrist. She was a co-applicant. She was directly involved in WPs 2.1, 2.2, 3.2 and 3.3. This work included involvement in the design of the original programme, liaising with sites that recruited those with ASD, interviewing commissioners and critically reviewing qualitative and quantitative data. She contributed detailed adjustments to the draft report and approved the final version.
Janet E McDonagh is a Clinical Senior Lecturer in Paediatric and Adolescent Rheumatology at the University of Manchester. She was a co-applicant. She co-led WP 3.1 and was directly involved in WPs 1.1 and 1.2. This work included involvement in the design of the original programme, being local principal investigator at one of the three participating sites of WP 3.1, interpreting data and writing papers from WP 3.1, providing direct input and support for the health passport work of WP 1.2, and identifying and
ACKNOWLEDGEMENTS
NIHR Journals Library www.journalslibrary.nihr.ac.uk
establishing links with relevant organisations elsewhere in the UK for WPs 1.1 and 1.2 to ensure generalisability of the outputs of the programme. She co-designed the DAH toolkit. She contributed detailed adjustments to the draft report and approved the final version.
Caroline Bennett is Assistant Director of the Council for Disabled Children, London. She was a co-applicant. She was directly involved in WPs 1.1, 1.2 and 3.1. This work involved regular assistance
with the engagement of young people in the programme’s work. She facilitated workshops in London
and Newcastle that enabled young people from across the country to discuss preliminary results of the programme. She developed facilitator guides for the subsequent rollout of these workshops. She contributed detailed adjustments to the draft report and approved the final version.
Jennifer Hislop was a Research Associate in Health Economics at Newcastle University. She contributed to WPs 1.3 and 2.3. This work involved interviewing young people in the WP 1.3 Q-sort study and analysing the data. She contributed to one published paper. In WP 2.2 she developed a DCE and she modelled the health economic data. She contributed detailed adjustments to the draft report and approved the final version.
Gregory Maniatopoulos is a Senior Research Associate in Medical Sociology at Newcastle University. He led WP 3.2 and was directly involved in WP 3.3. His work involved analysis of qualitative data, three in-depth site visits, and contributions to two submitted papers, one of which he led. He contributed detailed adjustments to the draft report and approved the final version.
Kay D Mann was a Research Assistant in Epidemiology at Newcastle University. She contributed to WP 2.1. This work involved cleaning, coding and analysing data from all collection phases. She contributed detailed adjustments to the draft report and approved the final version.
Hannah Merrick was a Research Assistant at Newcastle University. She contributed to WP 2.1, drafted and distributed newsletters, organised internal seminars and identified relevant new publications in the field. The work in WP 2.1 involved collecting, checking and analysing data. She contributed to two published papers. She contributed detailed adjustments to the draft report and approved the final version. Mark S Pearce is Professor of Applied Epidemiology at Newcastle University. He was a co-applicant. He was directly involved in WPs 2.1 and 2.3. This work involved supervision of a research assistant and detailed discussions about methods of analysis and interpretation of results. He contributed detailed adjustments to the draft report and approved the final version.
Debbie Reape was Deputy Director of Nursing at Northumbria Healthcare NHS Foundation Trust. She was a co-applicant. She was directly involved in WPs 1.1, 1.2, 3.1 and 3.2. This work involved assistance with
many aspects of the engagement of young people in the programme’s work. As senior manager in the
sponsoring trust, she facilitated meetings and provided contacts for interviews with commissioners. She participated in data collection in WP 3.2 at meetings with commissioners. She contributed detailed adjustments to the draft report and approved the final version.
Luke Vale is The Health Foundation Professor of Health Economics at Newcastle University. He was a co-applicant. He led WPs 1.3 and 2.3 and was involved in WP 3.2. This work involved planning the economic work and supervising a research assistant in this work. He also supervised a research associate in the WP 3.2 on commissioning. He contributed to three published papers from these WPs. He contributed detailed adjustments to the draft report and approved the final version.
Publications
Watson R, Parr J, Joyce C, May C, Le Couteur A. Models of healthcare transition for young people with
complex health needs: a scoping review. Child Care Health Dev 2011;37:780–91. https://doi.org/10.1111/
j.1365-2214.2011.01293.x
Colver A, Longwell S. New understanding of adolescent brain development: relevance to transitional
healthcare for young people with long term conditions. Arch Dis Child 2013;98:902–7. https://doi.org/
10.1136/archdischild-2013-303945
Colver AF, Merrick H, Deverill M, Le Couteur A, Parr J, Pearce MS, et al. Study protocol: Longitudinal study of the transition of young people with complex health needs from child to adult health services. BMC Public Health 2013;13:675. https://doi.org/10.1186/1471-2458-13-675
Farre A, Wood V, Rapley T, Parr JR, Reape D, McDonagh JE. Developmentally appropriate healthcare for
young people: a scoping study. Arch Dis Child 2015;100:144–51. https://doi.org/10.1136/archdischild-
2014-306749
Merrick H, McConachie H, Le Couteur A, Mann K, Parr JR, Pearce MS, et al. Characteristics of young people with long term conditions close to transfer to adult health services. BMC Health Serv Res 2015;15:435. https://doi.org/10.1186/s12913-015-1095-6
Farre A, Wood V, McDonagh JE, Parr JR, Reape D, Rapley T. Health professionals’ and managers’ definitions
of developmentally appropriate healthcare for young people: conceptual dimensions and embedded
controversies. Arch Dis Child 2016;101:628–33. https://doi.org/10.1136/archdischild-2015-309473
Hislop J, Mason H, Parr JR, Vale L, Colver A. Views of young people with chronic conditions on transition
from pediatric to adult health services. J Adolesc Health 2016;59:345–53.
Kolehmainen N, McCafferty S, Maniatopoulos G, Vale L, Le Couteur A, Colver A; on behalf of the Transition
Collaborative Group. What constitutes successful commissioning of transition from children’s to adults’
services for young people with long-term conditions, and what are the challenges? An interview study. BMJ Paediatr Open 2017;1:e000085. https://doi.org/10.1136/bmjpo-2017-000085
Colver A, McConachie H, Le Couteur A, Dovey-Pearce G, Mann KD, McDonagh JE, et al.; Transition Collaborative Group. A longitudinal, observational study of the features of transitional healthcare associated with better outcomes for young people with long-term conditions. BMC Med 2018;16:111. Colver A, Pearse R, Watson RM, Fay M, Rapley T, Mann KD, Le Couteur A, Parr JR, McConachie H. on behalf of the Transition Collaborative Group. How well do services for young people with long term conditions deliver features proposed to improve transition? BMC Health Serv Res 2018;18:337.
Gray S, Cheetham T, McConachie H, Mann KD, Parr JR, Pearce MS, Colver A on behalf of the Transition Collaborative Group. A longitudinal, observational study examining the relationships of patient satisfaction with services and mental wellbeing to their clinical course in young people with Type 1 diabetes mellitus
during transition from child to adult health services. Diabet Med 2018;35:1216–22.
Maniatopoulos G, Le Couteur A, Vale L, Colver A. Falling through the gaps: exploring the role of
integrated commissioning in improving transition from children’s to adults’ services for young people
with long-term health conditions in England. J Health Serv Res Policy 2018;23:107–15.
ACKNOWLEDGEMENTS
NIHR Journals Library www.journalslibrary.nihr.ac.uk
McDonagh JE, Farre A, Gleeson H, Rapley T, Dovey-Pearce G, Reape D, et al.; Transition Collaborative Group. Making healthcare work for young people. Arch Dis Child 2018;103:623. https://doi.org/10.1136/ archdischild-2017-314573
Solanke F, Colver A, McConachie H; Transition collaborative group. Are the health needs of young people with cerebral palsy met during transition from child to adult healthcare? Child Care Health Dev
2018;44:355–63. https://doi.org/10.1111/cch.12549
Uljarevic´ M, Richdale A, Hedley D, Cai R, McConachie H, Merrick H, et al. The Hospital Anxiety and
Depression Scale: Factor Structure and Psychometric Properties in older adolescents and young adults
with Autism Spectrum Disorder. Autism Res 2018;11:258–69.
Dovey-Pearce G, Walker S, Fairgrieve S, Parker M, Rapley T. The burden of proof: the process of involving young people in research [published online ahead of print February 15 2019]. Health Expect 2019.