Author + information
- Lisa Salberg⁎ ()
- ↵⁎The Hypertrophic Cardiomyopathy Association, P.O. Box 306, 328 Green Pond Road, Hibernia, New Jersey 07842
The Hypertrophic Cardiomyopathy Association is a 501c3 nonprofit organization founded in 1996 to serve the hypertrophic cardiomyopathy (HCM) community in matters of advocacy, support, and education. The Hypertrophic Cardiomyopathy Association monitors publications on HCM daily, and after review of the paper by Sreeram et al. (1) from Germany and the United Kingdom regarding the use of a novel strategy of radiofrequency ablation in HCM children with obstruction, I was left wondering why these children were experimented on at all.
HCM patients, particularly children, have a history of being harmed by research and unbridled enthusiasm to use novel techniques, unfortunately at great risk to these already compromised patients. I remain perplexed with why the authors aggressively have promoted an invasive intervention to reduce outflow obstruction in children with an experimental technique when suitable therapies have been used, tested, and proven in adults and then used safely in children.
The standard of care for patients with HCM with obstruction (American College of Cardiology [2,3] as well as American Heart Association  and European Society of Cardiology  through their consensus recommendations and guidelines [2003 and 2011]), was abandoned in this study. In the past decade, these societies have agreed that invasive interventions to remove outflow obstruction in HCM should be reserved for those with drug-refractory symptoms and not as a first-line approach. Further, these recommendations have served patients well: complication rates have decreased and quality of life has improved. The use of tiredness as an inclusion criterion is highly disturbing because it is a difficult symptom to interpret in HCM patients of any age and, when reported by a third party (parent or caregiver), highly imprecise and is not a recognized symptom of obstruction.
The results of this study are more disturbing than the concept alone, reporting 2 deaths and 7 serious complications, including ventricular fibrillation, need for permanent pacing, valve replacement, implantable cardioverter-defibrillator implantation, failure and need for second attempt, burns, and myectomy—totalling a complication rate of more than 20%.
Although the HCM community of patients appreciates the investigation of new approaches to therapy, research on children with HCM must be held to the highest level of ethical and scientific standards. In our opinion, this research fell short. We disagree with the authors. This research does not merit further investigation in children and should be abandoned.
- American College of Cardiology Foundation
- Sreeram N.,
- Emmel M.,
- deGiovanni J.V.
- Maron B.J.,
- McKenna W.J.,
- Danielson G.K.,
- et al.
- Gersh B.J.,
- Maron B.J.,
- Bonow R.O.,
- et al.