Development of cancer surveillance guidelines in ataxia telangiectasia : A Delphi-based consensus survey of international experts
Neves, Renata 
(Nottingham University Hospitals NHS Trust (Regne Unit))
De Dios Perez, Blanca (University of Nottingham)
Panek, Rafal (Nottingham University Hospitals NHS Trust (Regne Unit))
Jagani, Sumit (Nottingham University Hospitals NHS Trust (Regne Unit))
Wilne, Sophie (Nottingham University Hospitals NHS Trust (Regne Unit))
Bhatt, Jayesh M. (Nottingham University Hospitals NHS Trust (Regne Unit))
Caputi, Caterina (Università degli Studi di Roma "La Sapienza")
Cirillo, Emilia (Federico II University)
Coman, David J. (University of Queensland, Brisbane)
Dückers, Gregor (Childrens Hospital Helios Klinikum Krefeld)
Gilbert, Donald L.
(University of Cincinnati College of Medicine)
Kay Koenig, Mary (The University of Texas McGovern Medical School)
Mansour, Lobna (Cairo University Children Hospital)
McDermott, Elizabeth (Nottingham University Hospital NHS Trust)
Pauni, Micaela (Hospital Italiano de Buenos Aires (Argentina))
Pignata, Claudio (Federico II University)
Perlman, Susan L. (University of California)
Porras, Oscar (National Children's Hospital "Dr. Carlos Sáenz Herrera")
Betina Porto, Mariela (Hospital Provincial de Rosario)
Schon, Katherine (Cambridge University Hospitals NHS Foundation Trust (Anglaterra))
Soler-Palacín, Pere
(Universitat Autònoma de Barcelona. Departament de Pediatria, Obstetrícia i Ginecologia i de Medicina Preventiva i Salut Pública)
Nick Russo, Sam (The University of Texas McGovern Medical School)
Takagi, Masatoshi
(Tokyo Medical and Dental University)
Tischkowitz, Marc (University of Cambridge)
Wainwright, Claire (Queensland Children's Hospital)
Dandapani, Madhumita (University of Nottingham)
Glazebrook, Cristine (University of Nottingham)
Suri, Mohnish
(Nottingham University Hospitals NHS Trust (Regne Unit))
Whitehouse, William P. (University of Nottingham)
Dineen, Robert A. (University of Nottingham)
| Fecha: |
2023 |
| Resumen: |
Ataxia telangiectasia (A-T) is a multiorgan disorder with increased vulnerability to cancer. Despite this increased cancer risk, there are no widely accepted guidelines for cancer surveillance in people affected by A-T. We aimed to understand the current international practice regarding cancer surveillance in A-T and agreed-upon approaches to develop cancer surveillance in A-T. We used a consensus development method, the e-Delphi technique, comprising three rounds. Round 1 consisted of a Delphi questionnaire and a survey that collected the details of respondents' professional background, experience, and current practice of cancer surveillance in A-T. Rounds 2 and 3 were designed based on previous rounds and modified according to the comments made by the panellists. The pre-specified consensus threshold was ≥75% agreement. Thirty-five expert panellists from 13 countries completed the study. The survey indicated that the current practice of cancer surveillance varies widely between experts and centres'. Consensus was reached that evidence-based guidelines are needed for cancer surveillance in people with A-T, with separate recommendations for adults and children. Statements relating to the tests that should be included, the age for starting and stopping cancer surveillance and the optimal surveillance interval were also agreed upon, although in some areas, the consensus was that further research is needed. The international expert consensus statement confirms the need for evidence-based cancer surveillance guidelines in A-T, highlights key features that the guidelines should include, and identifies areas of uncertainty in the expert community. This elucidates current knowledge gaps and will inform the design of future clinical trials. Ataxia Telangiectasia (A-T) is a multiorgan disorder with increased vulnerability to cancer. Despite this increased cancer risk, there are no widely accepted guidelines for cancer surveillance in people affected by A-T. The international expert consensus statement developed in this study, confirms the need for evidence-based cancer surveillance guidelines in A-T, highlights key features that the guidelines should include, and identifies areas of uncertainty in the expert community. |
| Derechos: |
Aquest document està subjecte a una llicència d'ús Creative Commons. Es permet la reproducció total o parcial, la distribució, la comunicació pública de l'obra i la creació d'obres derivades, fins i tot amb finalitats comercials, sempre i quan es reconegui l'autoria de l'obra original.  |
| Lengua: |
Anglès |
| Documento: |
Article ; recerca ; Versió publicada |
| Materia: |
Ataxia telangiectasia ;
Cancer predisposition ;
Cancer surveillance ;
Guidelines ;
International survey ;
Life-limiting disease |
| Publicado en: |
Cancer Medicine, Vol. 12 (june 2023) , p. 14663-14673, ISSN 2045-7634 |
DOI: 10.1002/cam4.6075
PMID: 37264737
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Registro creado el 2025-01-30, última modificación el 2025-12-05