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Harms and benefits of screening young people to prevent sudden cardiac death

BMJ 2016; 353 doi: (Published 20 April 2016) Cite this as: BMJ 2016;353:i1156

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Re: Harms and benefits of screening young people to prevent sudden cardiac death. Answer to Providencia’s rapid response.

We read with interest the comments by Providencia et al. on our paper related to pre-participation screening in young athletes [1]. The authors stress the importance of the concepts of informed consent and patient empowerment in modern medicine. We fully agree that patients – and asymptomatic individuals and their families in the context of screening alike – have to be involved in medical decision making. Providencia et al. conclude that if an athlete is diagnosed with a cardiac condition, it is crucial to inform him about this, and to involve him in decisions on eligibility and future care. They argue that this will allow the athlete to have the best treatment and will avoid future health problems.

We are not sure that detecting a disease that may lead to sudden cardiac death (SCD) in an asymptomatic young athlete, and correctly informing him, will avoid future health problems. Every diagnosis leads to additional investigations, treatments and decisions that may induce both beneficial and harmful effects. The most prevalent diseases detected at screening are the Wolff-Parkinson-White syndrome (WPW) and hypertrophic cardiomyopathy (HCM). SCD is extremely rare in asymptomatic subjects affected with one of those diseases. HCM is the most common underlying cause of SCD in young people with an absolute risk of 1 per million athletes per year. Some experts argue that asymptomatic people do not need to be treated. Other experts will proceed to catheter ablation or implantation of a defibrillator in selected individuals. They argue that, although it has not been shown that these interventions reduce the risk of SCD, there is a pathophysiological rationale for it. However, those treatment modalities have their proper mortality risk which may be of a similar magnitude of the SCD risk of asymptomatic affected individuals [2]. This means that it cannot be taken for granted that lives will be saved because of the detection of those diseases at screening.

All screenees considered at risk for SCD after full investigation, will have to be advised on how to proceed further in life. Some will be temporarily or permanently disqualified from sports participation. Others will be proposed a lifelong cardiologic follow-up or will be treated with drugs, some through invasive procedures. Since the absolute risk of SCD in these thoroughly investigated individuals (comprising both true- and false-positives) remains very low, most of them will not benefit from the recommendations they have been proposed, yet incur the harms induced. Temporary or permanent disqualification from sports participation obviously may directly induce psychological harm both in the screenee and his family, whereas the generally accepted beneficial effects of physical activity on mental and physical health may be lost. The anxiety mongering resulting from overemphasising extremely rare events, and the resulting medicalisation of the life of the healthiest individuals of our society, raise ethical questions. Taking into consideration the very small risk of SCD in true-positives and the very small mortality risk associated with invasive testing and/or treatment of all positives, the harm induced by screening might be larger than the benefit.

The absence of evidence of benefit of pre-participation screening has recently been confirmed in a recommendation issued by the American Heart Association, stating that “Mandatory and universal mass screening with 12-lead ECGs in large general populations of young healthy people 12 to 25 years of age (including on a national basis in the United States) to identify genetic/congenital and other cardiovascular abnormalities is not recommended for athletes and non-athletes alike (Class III, no evidence of benefit; Level of Evidence C)” [3].

Therefore, in our view, patient involvement should not start at the moment a potential problem is detected, but at the very start of the process before any investigation is done. Athletes and their families should be fully informed about the aforementioned uncertainties surrounding the potential benefits and harms of screening. However, while informing the screenee is a necessary condition to obtain a relevant consent, it is certainly not a sufficient one. The (young) age and the capability of the screenee to understand and to use the information have to be taken into account. We know that health literacy, a determinant factor of effective use of medical care, is characterised by a socioeconomic gradient and that the weakest of the society have also the lowest level of literacy [4,5]. Practitioners involved in screening have to be trained to correctly communicate this information to lay people in whom they eventually may propose to stop participating in competitive sports and in whose healthy lifestyle they interfere.

We agree that empowerment of screenees (before screening) and of patient-athletes (after the detection of a disease) are crucial for the provision of effective and equitable healthcare, but we have to make these concepts tangible and we have to be sure that they can be applied in the real world.

1. Van Brabandt H, Desomer A, Gerkens S, et al. Harms and benefits of screening young people to prevent sudden cardiac death. BMJ 2016;353:i1156.
2. Desomer A, Gerkens S, Vinck I, et al. Cardiovascular pre-participation screening in young athletes. Belgian Health Care Knowledge Centre (KCE), 2015. KCE Reports 241.
3. Maron BJ, Levine BD, Washington RL, et al. Eligibility and Disqualification Recommendations for Competitive Athletes With Cardiovascular Abnormalities: Task Force 2: Preparticipation Screening for Cardiovascular Disease in Competitive Athletes: A Scientific Statement From the American Heart Association and American College of Cardiology. Circulation 2015;132(22):e267-72.
4. Sorensen K, Van den Broucke S, Fullam J, et al. Health literacy and public health: a systematic review and integration of definitions and models. BMC Public Health 2012;12:80.
5. Van den Broucke S, Renwart A. La littéracie en santé. Un médiateur des inégalités sociales et des comportements de santé. Louvain-la-Neuve: Université Catholique de Louvain - Faculté de psychologie et des sciences de l'éducation, 2014.

Competing interests: No competing interests

01 August 2016
Christian Léonard
Health economist
Anja Desomer, Sophie Gerkens, Mattias Neyt, Hans Van Brabandt
Belgian Health Care Knowledge Centre (KCE)
Kruidtuinlaan 55 1000 Brussels Belgium