{"status":"ok","message-type":"work","message-version":"1.0.0","message":{"indexed":{"date-parts":[[2026,10,19]],"date-time":"2026-10-19T16:09:36Z","timestamp":1792426176417,"version":"4.5.0"},"reference-count":49,"publisher":"Wiley","issue":"3","license":[{"start":{"date-parts":[[2023,3,16]],"date-time":"2023-03-16T00:00:00Z","timestamp":1678924800000},"content-version":"vor","delay-in-days":0,"URL":"http:\/\/creativecommons.org\/licenses\/by\/4.0\/"}],"funder":[{"DOI":"10.13039\/100011731","name":"Action for A-T","doi-asserted-by":"publisher","id":[{"id":"10.13039\/100011731","id-type":"DOI","asserted-by":"publisher"}]}],"content-domain":{"domain":["onlinelibrary.wiley.com"],"crossmark-restriction":true},"short-container-title":["Health Expectations"],"published-print":{"date-parts":[[2023,6]]},"abstract":"<jats:title>Abstract<\/jats:title><jats:sec><jats:title>Background\/Objectives<\/jats:title><jats:p>Ataxia\u2013telangiectasia (A\u2010T) 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\u2010based guidelines for cancer screening are not currently used in the United Kingdom for people affected by A\u2010T. This study aims to understand how people with A\u2010T and their parents feel about cancer surveillance using whole\u2010body magnetic resonance imaging (MRI) to inform the future development of cancer surveillance guidelines.<\/jats:p><\/jats:sec><jats:sec><jats:title>Design\/Methods<\/jats:title><jats:p>We conducted semistructured interviews with people affected by A\u2010T. Data were analysed inductively using thematic analysis.<\/jats:p><\/jats:sec><jats:sec><jats:title>Results<\/jats:title><jats:p>Nine parents of children with A\u2010T and four adults with A\u2010T 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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Conclusion<\/jats:title><jats:p>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.<\/jats:p><\/jats:sec><jats:sec><jats:title>Patient or Public Contribution<\/jats:title><jats:p>People with A\u2010T and parents of people with A\u2010T 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.<\/jats:p><\/jats:sec>","DOI":"10.1111\/hex.13756","type":"journal-article","created":{"date-parts":[[2023,3,17]],"date-time":"2023-03-17T06:37:49Z","timestamp":1679035069000},"page":"1358-1367","update-policy":"https:\/\/doi.org\/10.1002\/crossmark_policy","source":"Crossref","is-referenced-by-count":7,"title":["Whole\u2010body MRI for cancer surveillance in ataxia\u2013telangiectasia: A qualitative study of the perspectives of people affected by A\u2010T and their families"],"prefix":"10.1111","volume":"26","author":[{"ORCID":"https:\/\/orcid.org\/0000-0001-8835-2366","authenticated-orcid":false,"given":"Renata","family":"Neves","sequence":"first","affiliation":[{"name":"Radiological Sciences, Mental Health and Division of Clinical Neuroscience University of Nottingham Nottingham UK"},{"name":"Department of Radiology Nottingham University Hospitals NHS Trust Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Blanca de Dios","family":"Perez","sequence":"additional","affiliation":[{"name":"Division of Rehabilitation, Ageing and Wellbeing, Centre for Rehabilitation and Ageing Research, School of Medicine University of Nottingham Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Tierney","family":"Tindall","sequence":"additional","affiliation":[{"name":"Mental Health and Division of Clinical Neuroscience, School of Medicine University of Nottingham Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Natasha Schneider","family":"Fernandez","sequence":"additional","affiliation":[{"name":"Independent Patient and Parent Representative Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Rafal","family":"Panek","sequence":"additional","affiliation":[{"name":"Department of Medical Physics and Clinical Engineering Nottingham University Hospitals NHS Trust Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sophie","family":"Wilne","sequence":"additional","affiliation":[{"name":"Department of Paediatric Oncology Nottingham University Hospitals NHS Trust Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Mohnish","family":"Suri","sequence":"additional","affiliation":[{"name":"Nottingham Clinical Genetics Service Nottingham University Hospitals NHS Trust Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"William","family":"Whitehouse","sequence":"additional","affiliation":[{"name":"Division of Child Health, Obstetrics and Gynaecology, School of Medicine University of Nottingham Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Sumit","family":"Jagani","sequence":"additional","affiliation":[{"name":"Department of Radiology, Nottingham Children's Hospital Nottingham University Hospitals NHS Trust Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"ORCID":"https:\/\/orcid.org\/0000-0001-8444-6007","authenticated-orcid":false,"given":"Madhumita","family":"Dandapani","sequence":"additional","affiliation":[{"name":"Children's Brain Tumour Research Centre, Medical School University of Nottingham Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Robert A.","family":"Dineen","sequence":"additional","affiliation":[{"name":"Radiological Sciences, Mental Health and Division of Clinical Neuroscience University of Nottingham Nottingham UK"},{"name":"NIHR Nottingham Biomedical Research Centre Nottingham UK"},{"name":"Division of Clinical Neuroscience, Sir Peter Mansfield Imaging Centre University of Nottingham Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]},{"given":"Cris","family":"Glazebrook","sequence":"additional","affiliation":[{"name":"Institute of Mental Health University of Nottingham  Nottingham UK"}],"role":[{"vocabulary":"crossref","role":"author"}]}],"member":"311","published-online":{"date-parts":[[2023,3,16]]},"reference":[{"key":"e_1_2_10_2_1","doi-asserted-by":"publisher","DOI":"10.1186\/s13023-016-0543-7"},{"key":"e_1_2_10_3_1","doi-asserted-by":"publisher","DOI":"10.1080\/1744666X.2020.1810570"},{"key":"e_1_2_10_4_1","doi-asserted-by":"publisher","DOI":"10.1007\/978-3-642-78278-7"},{"key":"e_1_2_10_5_1","volume-title":"Ataxia\u2010Telangiectasia in Children: Guidance on Diagnosis and Clinical Care","author":"The Ataxia Telangiectasia Society","year":"2014"},{"key":"e_1_2_10_6_1","unstructured":"NHS England. 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