Skip to main content

Research Repository

Advanced Search

Whole-body MRI for cancer surveillance in ataxia–telangiectasia: A qualitative study of the perspectives of people affected by A-T and their families

Neves, Renata; Perez, Blanca de Dios; Tindall, Tierney; Fernandez, Natasha Schneider; Panek, Rafal; Wilne, Sophie; Suri, Mohnish; Whitehouse, William; Jagani, Sumit; Dandapani, Madhumita; Dineen, Robert A.; Glazebrook, Cris

Whole-body MRI for cancer surveillance in ataxia–telangiectasia: A qualitative study of the perspectives of people affected by A-T and their families Thumbnail


Authors

Renata Neves

Tierney Tindall

Natasha Schneider Fernandez

Rafal Panek

Sophie Wilne

Mohnish Suri

William Whitehouse

Sumit Jagani

Profile Image

Dr MADHUMITA DANDAPANI Madhumita.Dandapani@nottingham.ac.uk
Clinical Associate Professor of Paediatric Oncology/Neuro Oncology

ROBERT DINEEN rob.dineen@nottingham.ac.uk
Professor of Neuroradiology

Cris Glazebrook



Abstract

Background/Objectives: Ataxia–telangiectasia (A-T) is a complex inherited disease associated with an increased risk of malignancy. Surveillance guidelines have demonstrated significant health benefits in other cancer predisposition syndromes. However, evidence-based guidelines for cancer screening are not currently used in the United Kingdom for people affected by A-T. This study aims to understand how people with A-T and their parents feel about cancer surveillance using whole-body magnetic resonance imaging (MRI) to inform the future development of cancer surveillance guidelines. Design/Methods: We conducted semistructured interviews with people affected by A-T. Data were analysed inductively using thematic analysis. Results: Nine parents of children with A-T and four adults with A-T were interviewed. Five main themes emerged from the data, including (1) cancer screening was considered invaluable with the perceived value of early detection highlighted; (2) the cancer fear can increase anxiety; (3) the perceived limitations around current practice, with the responsibility for monitoring falling too strongly on parents and patients; (4) the need for effective preparation for cancer screening, including clear communication and (5) the challenges associated with MRI screening, where specific recommendations were made for improving the child's experience. Conclusion: This study suggests that stakeholders are positive about the perceived advantages of a cancer screening programme. Ongoing support and preparation techniques should be adopted to maximise adherence and minimise adverse psychosocial outcomes. Patient or Public Contribution: People with A-T and parents of people with A-T were actively involved in this study by giving their consent to be interviewed. An independent parent representative contributed to the study, supporting the research team in interpreting and commenting on the appropriateness of the language used in this report.

Citation

Neves, R., Perez, B. D. D., Tindall, T., Fernandez, N. S., Panek, R., Wilne, S., …Glazebrook, C. (2023). Whole-body MRI for cancer surveillance in ataxia–telangiectasia: A qualitative study of the perspectives of people affected by A-T and their families. Health Expectations, 26(3), 1358-1367. https://doi.org/10.1111/hex.13756

Journal Article Type Article
Acceptance Date Mar 3, 2023
Online Publication Date Mar 16, 2023
Publication Date 2023-06
Deposit Date May 22, 2023
Publicly Available Date May 22, 2023
Journal Health Expectations
Print ISSN 1369-6513
Electronic ISSN 1369-7625
Publisher Wiley
Peer Reviewed Peer Reviewed
Volume 26
Issue 3
Pages 1358-1367
DOI https://doi.org/10.1111/hex.13756
Keywords cancer predisposition, life‐limiting disease, psychosocial impact, Public and Patient Involvement and Engagement, qualitative research
Public URL https://nottingham-repository.worktribe.com/output/18805685
Publisher URL https://onlinelibrary.wiley.com/doi/10.1111/hex.13756
Additional Information Received: 2022-08-19; Accepted: 2023-03-03; Published: 2023-03-16