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• W4232012023 abstract "We welcome the comments from Dr Abramson on our publication of the first guidelines addressing care for retinoblastoma families in the United States.1Skalet A.H. Gombos D.S. Gallie B.L. et al.Screening children at risk for retinoblastoma: consensus report from the American Association of Ophthalmic Oncologists and Pathologists.Ophthalmology. 2018; 125: 453-458Abstract Full Text Full Text PDF PubMed Scopus (59) Google Scholar We respect Dr Abramson’s years of experience. The guidelines were a collaborative result from national experts, including a physician representative from Dr Abramson’s program. Together we agreed on a process for screening children at risk for retinoblastoma because of family history. We met at the biennial national meeting of the American Association of Ophthalmic Oncology and Pathology in 2015 in a panel format with an open discussion with the audience. We debated several topics, including risk stratification, timing and type of screening, and reached a consensus with added data from several major retinoblastoma centers, including Dr Abramson’s. The consensus statement presented in our article was developed by senior leaders in retinoblastoma care representing major North American centers. The article was meticulously and constructively peer reviewed, and was endorsed by the American Academy of Pediatrics, American Society of Pediatric Hematology and Oncology, American Association for Pediatric Ophthalmology and Strabismus, and by the Quality of Care Secretariat of the American Academy of Ophthalmology. We understand not everyone will agree with every point in any consensus. The final recommendations are made in the best interest of affected patients, after much debate among our experts. In response to Dr Abramson’s comments, we focus herein on the most important points. First, we agree and emphasize in the guidelines that genetic testing is important in the management of children at risk for retinoblastoma. Clarification of a child’s risk through genetic testing allows the children with family history of retinoblastoma who are confirmed to have inherited the familial RB1 mutation to be triaged to a high-risk screening protocol and the majority released from an ophthalmologist’s care entirely (after confirmation that the child has not inherited the familial RB1 mutation and is at population risk for retinoblastoma). Second, stratifying risk is standard practice in screening, because many factors need to be considered, including test availability, risks of late diagnosis, and costs and risks of screening.2Kamihara J. Bourdeaut F. Foulkes W.D. et al.Retinoblastoma and neuroblastoma predisposition and surveillance.Clin Cancer Res. 2017; 23: e98-e106Crossref PubMed Scopus (127) Google Scholar New data suggest that early and repeated anesthesia may affect the development of children’s brains, as highlighted in recent US Food and Drug Administration drug safety communication warnings.3FDA Drug Safety CommunicationFDA review results in new warnings about using general anesthetics and sedation drugs in young children and pregnant women.www.fda.gov/Drugs/DrugSafety/ucm532356.htmGoogle Scholar For higher risk patients, our consensus discussion concluded that the risk of blinding disease justified a series of examinations under anesthesia, but anesthesia risk was typically not warranted for children at <1% risk for disease. Third, although we agree the published data4Moll A.C. Imhof S.M. Meeteren A.Y. et al.At what age could screening for familial retinoblastoma be stopped? A register based study 1945-98.Br J Ophthalmol. 2000; 84: 1170-1172Crossref PubMed Scopus (28) Google Scholar, 5Rothschild P.R. Lévy D. Savignoni A. et al.Familial retinoblastoma: fundus screening schedule impact and guideline proposal. A retrospective study.Eye (Lond). 2011; 25: 1555-1561Crossref PubMed Scopus (22) Google Scholar support ending screening earlier than our recommendations, our final consensus reflected information contributed by a senior member of the American Association of Ophthalmic Oncology and Pathology, saying he had treated a child who developed a retinoblastoma tumor at age 5 years after systematic screening. The primary goal of our surveillance guidelines was to communicate a rational approach to screening children at risk for familial retinoblastoma. A secondary goal was to improve insurance coverage for screening examinations and genetic testing. Expert retinoblastoma clinicians know that this approach vastly improves outcomes for children affected by retinoblastoma, at much less human and financial cost than late diagnosis. Sadly, these screening processes have not been covered universally in many regions of this country. Future revisions to our current recommendations are welcome, because improved screening modalities and better understanding of the risks of anesthesia in children evolve. We recognize individual centers and clinicians may choose to screen with a different strategy. Nonetheless, our suggested screening program is a valid and useful system, with particular usefulness in assisting clinicians who are not focused on retinoblastoma, and may be unaware of risks for children in families with retinoblastoma. Re: Skalet et al.: Screening children at risk for retinoblastoma: consensus report from the American Association of Ophthalmic Oncologists and Pathologists (Ophthalmology. 2018;125:453-458)OphthalmologyVol. 125Issue 9PreviewI read the article “Screening Children at Risk for Retinoblastoma Consensus Report from the American Association of Ophthalmic Oncologists and Pathologists”1 with concern. This publication may have been a “consensus” of the authors, but many of us in this association were unaware of the project, had no input into the results, and do not agree with some of the statements and, most important, the screening strategy recommended. Because this is a Letter to the Editor I will forgo correcting some of the factual errors in the paper and focus on the underlying recommendations, which are seriously flawed (and potentially dangerous). Full-Text PDF" @default.
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