Whole-Body MRI for cancer surveillance in Ataxia Telangiectasia: A
qualitative study of the perspectives of people affected by A-T and
Background/objectives: Ataxia Telangiectasia (A-T) is a complex
inherited disease that is associated with an increased risk of
malignancy. Surveillance guidelines have demonstrated significant health
benefits in other cancer predisposition syndromes (CPS). Evidence-based
guidelines for cancer screening are not currently used in the UK 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
MRI to inform the future development of cancer surveillance guidelines.
Design/Methods: We conducted semi-structured interviews of 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. All
participants viewed cancer screening for children with A-T as invaluable
and emphasised the perceived value of early detection. The second theme
acknowledged the anxiety associated with cancer and cancer surveillance
and the third theme highlighted the perceived limitations around current
practice, with the responsibility for monitoring falling too strongly on
parents and patients. The fourth theme identified the need for effective
preparation for cancer screening, including clear communication, and the
challenges of MRI screening were recognised in the fifth theme with
specific recommendations 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.