Primum non nocere: a call for balance when reporting on CTE
2019; Elsevier BV; Volume: 18; Issue: 3 Linguagem: Inglês
10.1016/s1474-4422(19)30020-1
ISSN1474-4465
AutoresWilliam Stewart, Kieren Allinson, Safa Al‐Sarraj, Corbin Bachmeier, Karen Barlow, Antonio Belli, Mark P. Burns, Alan Carson, Fiona Crawford, Kristen Dams‐O'Connor, Ramon Diaz‐Arrastia, C. Edward Dixon, Brian L. Edlow, Scott Ferguson, Bruce Fischl, Rebecca D. Folkerth, Steve Gentleman, Christopher C. Giza, M. Sean Grady, Adel Helmy, Mark Herceg, Janice L. Holton, David D. Howell, Peter J. Hutchinson, Diego Iacono, Juan Eugenio Iglesias, Miloš D. Ikonomović, Victoria E. Johnson, C. Dirk Keene, Julia Kofler, Vassilis E. Koliatsos, Edward Lee, Harvey S. Levin, Jonathan Lifshitz, Helen Ling, David J. Loane, Seth Love, Andrew I.R. Maas, Niklas Marklund, Christina L. Master, Damien McElvenny, David F. Meaney, David Menon, Thomas J. Montine, Benoit Mouzon, Elliott J. Mufson, Joseph Ojo, Mayumi L. Prins, Tamás Révész, Craig Ritchie, Colin Smith, Richard Sylvester, Cheuk Y. Tang, John Q. Trojanowski, Kathryn Urankar, Robert Vink, Cheryl L. Wellington, Elisabeth A. Wilde, Lindsay Wilson, Keith Owen Yeates, Douglas H. Smith,
Tópico(s)Cardiac Arrest and Resuscitation
ResumoAs clinicians and researchers in traumatic brain injury and neurodegeneration, we are concerned by the tone of reporting on chronic traumatic encephalopathy (CTE) that has developed over the past decade, highlighted in an article in The New York Times.1Belson K Doctors said hockey enforcer Todd Ewen did not have C.T.E. but he did.The New York Times. Nov 30, 2018; https://www.nytimes.com/2018/11/30/sports/hockey/todd-ewen-cte-hockey.html?smtyp=cur&smid=tw-nytsportsDate accessed: December 1, 2018Google Scholar Misleading reporting can have unintended, negative consequences and we call for balance from the medical and scientific communities and the media when communicating on issues related to CTE. Contrary to common perception, the clinical syndrome of CTE has not yet been fully defined,2Wilson L Stewart W Dams-O'Connor K et al.The chronic and evolving neurological consequences of traumatic brain injury.Lancet Neurol. 2017; 16: 813-825Summary Full Text Full Text PDF PubMed Scopus (254) Google Scholar its prevalence is unknown, and the neuropathological diagnostic criteria are no more than preliminary.3McKee A Cairns NJ Dickson DW et al.The first NINDS/NIBIB consensus meeting to define neuropathological criteria for the diagnosis of chronic traumatic encephalopathy.Acta Neuropathol. 2016; 131: 75-86Crossref PubMed Scopus (534) Google Scholar We have an incomplete understanding of the extent or distribution of pathology required to produce neurological dysfunction or to distinguish diseased from healthy tissue, with the neuropathological changes of CTE reported in apparently asymptomatic individuals.4Ling H Holton JL Shaw K et al.Histological evidence of chronic traumatic encephalopathy in a large series of neurodegenerative diseases.Acta Neuropathol. 2015; 130: 891-893Crossref PubMed Scopus (70) Google Scholar, 5Noy S Krawitz S Del Bigio MR Chronic traumatic encephalopathy-like abnormalities in a routine neuropathology service.J Neuropath Exp Neur. 2016; 75: 1145-1154Crossref PubMed Scopus (47) Google Scholar Although commonly quoted, no consensus agreement has been reached on staging the severity of CTE pathology. A single focus of the pathology implicated in CTE is not yet sufficient evidence to define disease. Recognising limitations of the diagnostic process in human pathology, pathologists are careful to note that they are merely providing an opinion, thereby acknowledging that another pathologist might reasonably reach a different conclusion on the same case.6Manion E Cohen MB Weydert J Mandatory second opinion in surgical pathology referral material: clinical consequences of major disagreements.Am J Surg Pathol. 2008; 32: 732-737Crossref PubMed Scopus (112) Google Scholar In diagnoses where the criteria for assessment and reporting are established by broad consensus, the expectation is that variance in opinion is minimised. However, at this time, while CTE diagnostic criteria are far from established, discordance in opinions on individual cases is to be expected.1Belson K Doctors said hockey enforcer Todd Ewen did not have C.T.E. but he did.The New York Times. Nov 30, 2018; https://www.nytimes.com/2018/11/30/sports/hockey/todd-ewen-cte-hockey.html?smtyp=cur&smid=tw-nytsportsDate accessed: December 1, 2018Google Scholar Unfortunately, the uncertainties around the clinical syndrome and the pathological definition of CTE are not acknowledged adequately in much of the current research literature or related media reporting, which at times has resembled science by press conference.7Moore A Bad science in the headlines. Who takes responsibility when science is distorted in the mass media?.EMBO Rep. 2016; 7: 1193-1196Crossref Scopus (13) Google Scholar Too often an inaccurate impression is portrayed that CTE is clinically defined, its prevalence is high, and pathology evaluation is a simple positive or negative decision. This distorted reporting on CTE might have dire consequences. Specifically, individuals with potentially treatable conditions, such as depression or post-traumatic stress disorder, might make decisions on their future on the basis of a misplaced belief that their symptoms inevitably herald an untreatable, degenerative brain disease culminating in dementia. We propose that the principle of, first, to do no harm, is used when communicating on CTE, whatever the platform. In particular, the many remaining uncertainties should always be acknowledged. Otherwise, the risk of doing harm is very real. Declarations of interest are listed in the appendix. Download .pdf (.45 MB) Help with pdf files Supplementary appendix Correction to Lancet Neurol 2019; 18: 231–33Stewart W, Allinson K, Al-Sarraj S, et al. Primum non nocere: a call for balance when reporting on CTE. Lancet Neurol 2019; 18: 231–33—The appendix was incorrectly omitted from the original Correspondence. This correction has been made to the online version as of Feb 15, 2019. Full-Text PDF First report the findings: genuine balance when reporting CTEIn 1983, US Congressman Dennis Eckart asked Robert Patterson, a doctor from the American Medical Association, “can you equate for me the impact of a blow to a boxer's head with the force of impact in another sport...?” Patterson then described in congressional testimony how the American footballer “Frank Gifford was…knocked cold for 24 hours…The blow is the same…it's small, repetitive blows…it's this cumulative effect that [leads] to the punch-drunk syndrome”.1 Patterson made scientific findings from decades of previous research palatable for Congress, but conveying evidence became harder in the following decades. Full-Text PDF First report the findings: genuine balance when reporting CTEWilliam Stewart and colleagues1 (March 1, p 231–33) offer an asymmetric “call for balance”1 when reporting the relationship between repeated head trauma and chronic traumatic encephalopathy (CTE). They misconstrue the term “first, do no harm” as a call for inaction and the one-sided reporting of important uncertainties. By contrast, public health professionals and, we hope, most physicians understand that the scientific and ethical imperative is to reduce net harm to patients and to society, and that demands concern for the consequences of both harmful reassurances and harmful actions. Full-Text PDF
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