CRediT contribution statement
Marc Lipman (https://orcid.org/0000-0001-7501-4448): Conceptualisation, Methodology, Formal analysis, Resources, Data curation, Writing – original draft, Writing – reviewing and editing, Supervision, Project administration, Funding acquisition.
Ibrahim Abubakar (https://orcid.org/0000-0002-0370-1430): Conceptualisation, Writing – reviewing and editing, Supervision, Funding acquisition.
Colin NJ Campbell (https://orcid.org/0000-0002-6239-3378): Conceptualisation, Writing – reviewing and editing, Project administration, Funding acquisition.
Caroline Clarke (https://orcid.org/0000-0002-4676-1257): Methodology, Formal analysis, Resources, Data Curation, Writing – original draft, Writing – reviewing and editing, Visualisation, Supervision.
Andrew J Copas (https://orcid.org/0000-0001-8968-5963): Methodology, Formal analysis, Writing – reviewing and editing.
Patricia Costello (https://orcid.org/0009-0006-4669-744X): Software, Investigation, Writing – reviewing and editing.
Marcia Darvell (https://orcid.org/0009-0008-2873-6585): Conceptualisation, Software, Resources, Data curation, Writing – reviewing and editing, Project administration, Funding acquisition.
Robert Horne (https://orcid.org/0000-0002-3068-8438): Conceptualisation, Methodology, Formal analysis, Resources, Data curation, Writing – reviewing and editing, Supervision, Funding acquisition.
Rachael M Hunter (https://orcid.org/0000-0002-7447-8934): Methodology, Writing – reviewing and editing, Supervision.
Annie SK Jones (https://orcid.org/0000-0001-7868-2804): Methodology, Software, Formal analysis, Investigation, Resources, Data Curation, Writing – original draft, Writing – reviewing and editing, Visualisation.
Aaron S Karat (https://orcid.org/0000-0001-9643-664X): Methodology, Software, Formal analysis, Investigation, Data curation, Writing – original draft, Writing – reviewing and editing, Visualisation.
Karina Kielmann (https://orcid.org/0000-0001-5519-1658): Conceptualisation, Methodology, Formal analysis, Investigation, Data curation, Writing – reviewing and editing, Supervision, Funding acquisition.
Ayşenur Kılıç (https://orcid.org/0000-0001-9266-5525): Formal analysis, Writing – reviewing and editing, Visualisation.
Heinke Kunst (https://orcid.org/0000-0002-0380-1116): Conceptualisation, Resources, Writing – reviewing and editing, Visualisation.
Mike Mandelbaum (https://orcid.org/0009-0006-4737-3674): Conceptualisation, Writing – reviewing and editing, Funding acquisition.
Zoe Moon (https://orcid.org/0000-0002-5242-1718): Formal analysis, Writing – reviewing and editing.
Al Story (https://orcid.org/0000-0003-3853-1715): Conceptualisation, Writing – reviewing and editing, Funding acquisition.
Jing Yi (Jessica) Weng (https://orcid.org/0000-0002-2875-4029): Formal analysis, Writing – reviewing and editing, Visualisation.
Helen R Stagg (https://orcid.org/0000-0003-4022-3447): Conceptualisation, Methodology, Formal analysis, Data curation, Writing – original draft, Writing – reviewing and editing, Visualisation, Funding acquisition.
Elizabeth Walker: Formal analysis, Investigation, Data curation, Visualisation.
Adam T Hill: Resources, Supervision, Validation.
Ben G Marshall: Resources, Supervision, Validation.
Jacqui White: Resources, Supervision, Validation.
Nicole Vidal: Formal analysis, Investigation, Data curation.
Mairi Redman: Project administration.
Amy L Clarke: Formal analysis, Investigation, Data curation.
Ceri McSparron: Investigation.
Ananna Rahman: Investigation.
Stella Arakelyan: Formal analysis.
Vladimir Kolodin: Investigation.
Karen Ang: Investigation.
Natalie Bidad: Formal analysis, Investigation, Data curation.
Ahmed Ali: Methodology.
Helen Clegg: Methodology.
Sharda Lavingia: Methodology.
Viren Lavingia: Methodology.
Audry Morrison: Methodology.
Elisha Pickett: Methodology.
Mylah Ramirez: Methodology.
Alison Rodger: Methodology.
Fatima Wurie: Methodology.
Steve Bradley: Supervision, Validation.
Martin Dedicoat: Supervision, Validation.
Amy McConville: Supervision, Validation.
Anita Roche: Supervision, Validation.
Alice Sitch: Supervision, Validation.
Other contributions
Martin Dedicoat: Chair of the Project Oversight Group.
Acknowledgements
NHS Staff: Clare Campbell, Francisca Nwoguh, and Maddy Wickers.
Our thanks also to In Tune for Life and UCL Creatives, who produced the animations and interactive booklet, respectively.
Patient data statement
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 is 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.
Ethics statement
This study received ethics approval on 24 December 2018 from Camberwell St. Giles Ethics Committee, UK (REC reference 18/LO/1818).
Information governance statement
University College London 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 Data Protection legislation, UCL is the Data Controller, and we process personal data in accordance with their instructions. You can find out more about how we handle personal data, including how to exercise your individual rights and the contact details for UCL’s Data Protection Office here: www.ucl.ac.uk/data-protection/.
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/GJML0604.
Primary conflicts of interest: Marc Lipman was Chair of the British Thoracic Society TB Specialist Advisory Group 2019–22 as well as Chair of UK Joint Tuberculosis Committee 2022–25 (both unpaid).
Ibrahim Abubakar was a member of the HTA Commissioning Committee, 3 August 2016–30 September 2018.
Robert Horne received licence fees for questionnaires from GSK, AstraZeneca, TEVA, Novartis, UCB, EliLilly, Sanofi, Pfizer and Gilead as well as Consulting fees to Spoonful of Sugar Ltd, a UCL business company of which he is a shareholder from AstraZeneca, UCB, Dalichi, Sciencus, Esai and Vertex. He also received payment or honoraria from the following: AbbVie, Abbott, Amgen, Astellas, AstraZeneca, Boehringer Ingelheim, Biogen, Gilead Sciences, GlaxoSmithKline, Janssen, Merck Sharp Dohme, Merck, Novartis, Pfizer, Procter & Gamble, Roche, Sanofi, Shire, TEVA, UCB. Robert Horne is also on the Advisory Boards of the following companies: AstraZeneca, UCB, Abbott, Novartis. He is also the founding Director of a UCL-Business company (Spoonful of Sugar Ltd) providing consultancy on treatment engagement and patient support programmes to healthcare policy makers, providers and pharmaceutical industry.
Aaron S Karat received salary support from the NIHR via Queen Margaret University and University College London. Between 2019 and 2024 they were also employed by the London School of Hygiene and Tropical Medicine and received consulting fees for TB-related work from the National TB Think Tank, The University of Cape Town Lung Institute, and the Aurum Institute (all South Africa), and from the Center for Health Policies and Studies, Moldova.
Karina Kielmann received salary support from NIHR as well as from Joint Health Systems Research Initiative and Barts Charity.
Helen R Stagg was supported by the UK MRC during this project [MR/R008345/1]. She was a scientific advisor on the World Health Organisation Ethics Review Committee for the ASCENT project and the cochair of the UK Academics and Professionals To End Tuberculosis 2020–2. She was a Formal Advisor to the World Health Organization’s Scientific Guidance on Evidence Generation on new regimens for TB treatment Development Group 2023–4.
Disclaimer
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.
Publications
Stagg HR, Abubakar I, Campbell CN, Copas A, Darvell M, Horne R, et al. IMPACT study on intervening with a manualised package to achieve treatment adherence in people with tuberculosis: protocol paper for a mixed-methods study, including a pilot randomised controlled trial. BMJ Open 2019 December 17;9:e032760. https://doi.org/10.1136/bmjopen-2019-032760. PMID: 31852704; PMCID: PMC6937100. https://pubmed.ncbi.nlm.nih.gov/31852704/
Jones ASK, Bidad N, Horne R, Stagg HR, Wurie FB, Kielmann K, et al. Determinants of non-adherence to anti-TB treatment in high income, low TB incidence settings: a scoping review. Int J Tuberc Lung Dis 2021 June 1;25:483–90. https://doi.org/10.5588/ijtld.21.0024. PMID: 34049611. https://pubmed.ncbi.nlm.nih.gov/34049611/
Arakelyan S, Karat AS, Jones ASK, Vidal N, Stagg HR, Darvell M, et al. Relational dynamics of treatment behavior among individuals with tuberculosis in high-income countries: a scoping review. Patient Prefer Adherence 2021 September 21;15:2137–54. https://doi.org/10.2147/PPA.S313633. PMID: 34584407; PMCID: PMC8464367. https://pubmed.ncbi.nlm.nih.gov/34584407/
Karat AS, Jones ASK, Abubakar I, Campbell CNJ, Clarke AL, Clarke CS, et al. ‘You have to change your whole life’: a qualitative study of the dynamics of treatment adherence among adults with tuberculosis in the United Kingdom. J Clin Tuberc Other Mycobact Dis 2021 March 29;23:100233. https://doi.org/10.1016/j.jctube.2021.100233. PMID: 33898764; PMCID: PMC8059079. https://pubmed.ncbi.nlm.nih.gov/33898764/
Jones ASK, Horne R, White J, Costello T, Darvell M, Karat AS, et al. Development and description of a theory-driven, evidence-based, complex intervention to improve adherence to treatment for tuberculosis in the UK: the IMPACT study. Health Psychol Behav Med 2023;12. https://doi.org/10.1080/21642850.2023.2277289
Conference papers
The Union World Conference on Lung Health October 2019 – Qualitative scoping review.
ESPACOMP the International Society for Medication Adherence conference November 2019 – Quantitative scoping review.
The Union World Conference on Lung Health September 2020 – Formative interview study.
European Health Psychology Society Conference August 2022 – Intervention development.
British Thoracic Society conference November 2022 – Health Economic evaluation.
British Thoracic Society conference November 2022 – Main study findings.
British Thoracic Society conference November 2022 – Patient and HCP interview study.
American Thoracic Society conference May 2023 – Main study findings including health economic evaluation.
Other
UCL/LSHTM World TB Day Event 24 March 2020 – Formative interview study (cine-reel).
UCL Medical Anthropology MSc Students’ Dissertations on: (1) TB and mental health; (2) TB and organisation of care.
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, 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.