CRediT contribution statement
Christine Norton (https://orcid.org/0000-0003-2259-0948): Conceptualisation (equal), Funding acquisition (lead), Investigation (equal), Methodology (equal), Project administration (supporting), Supervision (lead), Visualisation (lead), Writing – original draft (lead), Writing – reviewing and editing (lead).
Ailsa Hart (https://orcid.org/0000-0002-7141-6076): Conceptualisation (equal), Funding acquisition (supporting), Methodology (equal), Writing – reviewing and editing (supporting).
Rona Moss-Morris (https://orcid.org/0000-0002-2927-3446): Conceptualisation (equal), Funding acquisition (supporting), Methodology (equal), Supervision (supporting), Visualisation (supporting), Writing – reviewing and editing (supporting).
Laura Miller (https://orcid.org/0000-0001-8802-3554): Data curation (equal), Investigation (equal), Project administration (lead), Software (equal), Supervision (supporting), Visualisation (supporting), Writing – reviewing and editing (supporting).
Qasim Aziz (https://orcid.org/0000-0002-2718-2065): Conceptualisation (equal), Funding acquisition (supporting), Writing – reviewing and editing (supporting).
Fionn Cléirigh Büttner (https://orcid.org/0000-0002-5987-3063): Data curation (equal), Formal analysis (equal), Software (equal), Validation (equal), Visualisation (supporting), Writing – reviewing and editing (supporting).
Wladyslawa Czuber-Dochan (https://orcid.org/0000-0002-9889-1248): Formal analysis (equal), Funding acquisition (supporting), Investigation (equal), Visualisation (supporting), Writing – reviewing and editing (supporting).
Lesley Dibley (https://orcid.org/0000-0001-7964-7672): Formal analysis (equal), Funding acquisition (supporting), Investigation (equal), Visualisation (supporting), Writing – reviewing and editing (supporting).
Megan English-Stevens: Writing – reviewing and editing (supporting).
Julie Flowers: Writing – reviewing and editing (supporting).
Thomas Hamborg (https://orcid.org/0000-0001-7154-3983): Data curation (equal), Formal analysis (equal), Software (equal), Supervision (supporting), Validation (equal), Visualisation (supporting), Writing – reviewing and editing (supporting).
Borislava Mihaylova (https://orcid.org/0000-0002-0951-1304): Data curation (equal), Formal analysis (equal), Investigation (equal), Software (equal), Supervision (supporting), Validation (equal), Visualisation (supporting), Writing – reviewing and editing (supporting).
Richard CG Pollok (https://orcid.org/0000-0001-6452-6763): Conceptualisation (equal), Funding acquisition (supporting), Writing – reviewing and editing (supporting).
Chris Roukas (https://orcid.org/0000-0001-8410-7689): Data curation (equal), Formal analysis (equal), Software (equal), Validation (equal), Visualisation (supporting), Writing – reviewing and editing (supporting).
Sonia Saxena (https://orcid.org/0000-0003-3787-2083): Conceptualisation (equal), Funding acquisition (supporting), Writing – reviewing and editing (supporting).
Imogen Stagg (https://orcid.org/0000-0001-9862-5508): Investigation (equal), Project administration (supporting).
Louise Sweeney (https://orcid.org/0000-0001-6141-7844): Investigation (equal), Methodology (equal), Project administration (supporting), Writing – reviewing and editing (supporting).
Stephanie Taylor (https://orcid.org/0000-0001-7454-6354): Conceptualisation (equal), Funding acquisition (supporting), Writing – reviewing and editing (supporting).
Vari Wileman (https://orcid.org/0000-0002-9673-8047): Formal analysis (equal), Investigation (equal), Methodology (equal), Project administration (supporting), Software (equal), Supervision (supporting), Visualisation (supporting), Writing – reviewing and editing (supporting).
Acknowledgements
The authors thank our staff and students, as well as all the people living with IBD, and many others who contributed to IBD-BOOST. In particular, we thank: Jonathan Syred, our first programme manager, who set us on strong foundations; Micol Arom, Sula Windgassen and Sophie Fawson who worked on developing our intervention; Christian Horsnell for the graphical summaries; and Richard Driscoll and Helen Terry from Crohn’s and Colitis UK, who shared the vision. A list of people involved in IBD-BOOST can be found in Appendix 3.
Patient data statement
No routinely collected NHS data were used in this research.
Data-sharing statement
All data requests should be submitted to the corresponding author for consideration. Access to anonymised data may be granted following review.
We are in the process of sharing data with the UK IBD-BioResource for their members who participated in our survey to enable access to information on symptoms for people in their genetics database.
Ethics statement
All research within this programme was conducted in accordance with the World Medical Association Declaration of Helsinki. All studies which recruited human participants received full ethical approval:
Interviews in WP1: Wales Research Ethics Committee 4 reference: 17/WA/0349.
Survey: North West – Greater Manchester West Research Ethics Committee reference: 18/NW/0613. Approved on 11 October 2018.
Optimise: West Midlands -Black Country Research Ethics Committee reference: 19/WM/0107. Approved on 1 August 2019.
RCT: London – Surrey Research Ethics Committee reference: 19/LO/0750. Approved on 12 July 2019. Included SWAT approval and COVID-19 survey in an amendment.
Information governance statement
London North West University Healthcare NHS Trust is committed to handling all personal information in line with the UK Data Protection Act (2018) and the General Data Protection Regulation (EU GDPR) 2016/679. Under the Data Protection legislation, London North West University Healthcare NHS Trust is the Data Controller, and you can find out more about how we handle personal data, including how to exercise your individual rights and the contact details for our Data Protection Officer is Nuala Brodie-Buchan: n.buchan-brodie@nhs.net.
Disclosure of interests
Full disclosure of interests: Completed ICMJE forms for all authors, including all related interests, are available in the toolkit on the NIHR Journals Library report publication page at https://doi.org/10.3310/GJCN0923.
Primary conflicts of interest: Christine Norton: Speakers fees from: Medscape; Merck Pharmaceuticals; Tillotts Pharma UK, Lilly Pharmaceuticals; Pfizer: advisory board. Research grants from NIHR, including for this work (Chief Investigator); Trustee, GUTS UK; Chair of DMEC for AMELIE trial (EU funded).
Ailsa Hart: She has served as consultant, advisory board member or speaker for AbbVie, Arena, Atlantic, Bristol-Myers Squibb, Celgene, Celltrion, Falk, Galapogos, Lilly, Janssen, MSD, Napp Pharmaceuticals, Pfizer, Pharmacosmos, Shire and Takeda. She also serves on the Global Steering Committee for Genentech. Salary support for this grant.
Rona Moss-Morris: Beneficiary of licence between King’s College London and Mahana Therapeutics, Consulting fees – Mahana Therapeutics, 11 London. Payment or honoraria for lectures, presentations or educational events – EAPM and BABCP conferences, Central And North West London NHS Foundation Trust. Salary support for this grant.
Laura Miller: Salary support as programme manager for this grant.
Qasim Aziz: Funding as PI from Classado Biosciences Ltd; Takeda Pharmaceuticals and Dr Falk Pharma UK for commercial clinical trials; salary support for this grant.
Fionn Cléirigh Büttner: Salary support as statistician for this grant.
Wladyslawa Czuber-Dochan: Speaker fees from Dr Falk Pharma, Phama Cosmos and Crohn’s and Colitis Ireland; travel support from Lilly; and research funding from Bristol Myers Squibb and Crohn’s and Colitis UK; salary support for this grant.
Lesley Dibley: Speaker fees from Abbvie, Dr Falk, Ferring, Janssen and WebMD; funding to support research from Takeda and Janssen; salary support for this grant.
Megan English-Stevens: None.
Julie Flowers: None.
Thomas Hamborg: Salary support as senior statistician for this grant.
Borislava Mihaylova: Salary support as senior health economist for this grant; support from the National Institute for Health Research Barts Biomedical Research Centre (NIHR203330) and Bowel Research UK studentship (supervisor).
Richard CG Pollok: Advisory board Galapagos; salary support for this grant.
Chris Roukas: Salary support as health economist for this grant; PhD funding from Bowel Research UK.
Sonia Saxena: Is funded by the National Institute for Health and Care Research (NIHR) Senior Investigator Award, NIHR School for Public Health Research (SPHR) (grant number: NIHR 204000), NIHR Northwest London Applied Research Collaboration, and Imperial NIHR Biomedical Research Centre. The NIHR SPHR is a partnership between the Universities of Bristol, Cambridge, and Sheffield; Imperial; University College London; the London School of Hygiene and Tropical Medicine; LiLaC – a collaboration between the Universities of Liverpool and Lancaster; and Fuse – the Centre for Translational Research in Public Health, a collaboration between Newcastle, Durham, Northumbria, Sunderland, and Teesside Universities; salary support for this grant.
Imogen Stagg: Salary support as research nurse for this grant.
Louise Sweeney: Salary support as research fellow for this grant.
Stephanie Taylor: Salary support for this grant; member of HTA Clinical Evaluation and Trials Committee 2015–9; member of NIHR Programme Grants for Applied Research Sub-Panel committee 2020–4; NIHR Team Science Award: Chronic Obstructive pulmonary disease-MultiPle Long tErm conditions and Assistive Technology (COMPLEAT) Commences 1 March 2025; NIHR SPCR IV FR 8 ‘Assessing The Potential Of Assistive Technology In People With Chronic Obstructive Pulmonary Disease’; 18 months commenced 1 April 2023 co-applicant (CI Sohanpal, QMUL).
Vari Wileman: Salary support as research fellow for this grant.
Copyright and credit statement
Every effort has been made to obtain the necessary permissions for reproduction, to credit original sources appropriately and to respect copyright requirements. However, despite our diligence, we acknowledge the possibility of unintentional omissions or errors and we welcome notifications of any concerns regarding copyright or permissions.
Disclaimers
This article 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.