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

Author:

Neves Renata12ORCID,Perez Blanca de Dios3,Tindall Tierney4,Fernandez Natasha Schneider5,Panek Rafal6,Wilne Sophie7,Suri Mohnish8,Whitehouse William9,Jagani Sumit10,Dandapani Madhumita11ORCID,Dineen Robert A.11213,Glazebrook Cris14

Affiliation:

1. Radiological Sciences, Mental Health and Division of Clinical Neuroscience University of Nottingham Nottingham UK

2. Department of Radiology Nottingham University Hospitals NHS Trust Nottingham UK

3. Division of Rehabilitation, Ageing and Wellbeing, Centre for Rehabilitation and Ageing Research, School of Medicine University of Nottingham Nottingham UK

4. Mental Health and Division of Clinical Neuroscience, School of Medicine University of Nottingham Nottingham UK

5. Independent Patient and Parent Representative Nottingham UK

6. Department of Medical Physics and Clinical Engineering Nottingham University Hospitals NHS Trust Nottingham UK

7. Department of Paediatric Oncology Nottingham University Hospitals NHS Trust Nottingham UK

8. Nottingham Clinical Genetics Service Nottingham University Hospitals NHS Trust Nottingham UK

9. Division of Child Health, Obstetrics and Gynaecology, School of Medicine University of Nottingham Nottingham UK

10. Department of Radiology, Nottingham Children's Hospital Nottingham University Hospitals NHS Trust Nottingham UK

11. Children's Brain Tumour Research Centre, Medical School University of Nottingham Nottingham UK

12. NIHR Nottingham Biomedical Research Centre Nottingham UK

13. Division of Clinical Neuroscience, Sir Peter Mansfield Imaging Centre University of Nottingham Nottingham UK

14. Institute of Mental Health University of Nottingham Nottingham UK

Abstract

AbstractBackground/ObjectivesAtaxia–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/MethodsWe conducted semistructured interviews with people affected by A‐T. Data were analysed inductively using thematic analysis.ResultsNine 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.ConclusionThis 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 ContributionPeople 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.

Funder

Action for A-T

Publisher

Wiley

Subject

Public Health, Environmental and Occupational Health

Reference49 articles.

1. Ataxia telangiectasia: a review

2. Ataxia-telangiectasia: epidemiology, pathogenesis, clinical phenotype, diagnosis, prognosis and management

3. Ataxia-Telangiectasia

4. NHS England. Ataxia telangiectasia service (adult)—service specifications. 2013. Accessed January 2023.https://www.england.nhs.uk/wp-content/uploads/2018/08/Ataxia-telangiectasia-service-adult.pdf

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