About this Research Topic
With the progress in modern medicine, all people involved in medical care, including patients, families, caregivers, administrators, institutions, health care plans, insurances, society, and media, have focused their interest on the outcomes. There are several aspects to consider when discussing the outcomes in congenital heart defects.
The first problem is to define the outcomes of the currently available treatment for patients with congenital heart defects. In the past, survival was the only or most important criterion to judge and compare the outcomes. Nowadays, with the progress reached by surgery in the last few decades, and the substantial decrease of hospital mortality even for most complex congenital heart defects, hospital survival has been replaced by quality of life on long term as a parameter to evaluate the outcomes.
The second problem is about how to collect, analyse and study the outcomes for such variable patient populations, with endless differences related to the type of diagnosis, age and body weight, associated cardiac and non-cardiac malformations, general conditions, nutrition, completely different time and appropriateness of referral to a tertiary care hospital, availability of resources for the required treatment, expertise available in the team in charge.
On the other side, the accurate knowledge of the outcomes is indispensable in order to work to improve them. Once the data on outcomes are collected, a serious issue is how and to whom to make them available, to the professionals, to the individual patients and their families, to the hospitals, to research universities, to the health care plans, to the insurances, to the stake-holders, to the media, to governments, to the society at large. Finally, how we can contribute to improve the currently available outcomes?
Probably we cannot limit ourselves to compare our outcomes with the best results reported in the international databases for congenital heart defects. We have to investigate the tools used in the industry, in all high risk enterprises like aviation, space industry and car racing, and to apply the same methods to calculate the hazard risks to reduce the rate and seriousness of the complications observed in the treatment of patients with congenital heart defects. We own this progress as our primary responsibility towards our profession.
The first problem is to define the outcomes of the currently available treatment for patients with congenital heart defects. In the past, survival was the only or most important criterion to judge and compare the outcomes. Nowadays, with the progress reached by surgery in the last few decades, and the substantial decrease of hospital mortality even for most complex congenital heart defects, hospital survival has been replaced by quality of life on long term as a parameter to evaluate the outcomes.
The second problem is about how to collect, analyse and study the outcomes for such variable patient populations, with endless differences related to the type of diagnosis, age and body weight, associated cardiac and non-cardiac malformations, general conditions, nutrition, completely different time and appropriateness of referral to a tertiary care hospital, availability of resources for the required treatment, expertise available in the team in charge.
On the other side, the accurate knowledge of the outcomes is indispensable in order to work to improve them. Once the data on outcomes are collected, a serious issue is how and to whom to make them available, to the professionals, to the individual patients and their families, to the hospitals, to research universities, to the health care plans, to the insurances, to the stake-holders, to the media, to governments, to the society at large. Finally, how we can contribute to improve the currently available outcomes?
Probably we cannot limit ourselves to compare our outcomes with the best results reported in the international databases for congenital heart defects. We have to investigate the tools used in the industry, in all high risk enterprises like aviation, space industry and car racing, and to apply the same methods to calculate the hazard risks to reduce the rate and seriousness of the complications observed in the treatment of patients with congenital heart defects. We own this progress as our primary responsibility towards our profession.
Keywords: congenital heart defect
Important Note: All contributions to this Research Topic must be within the scope of the section and journal to which they are submitted, as defined in their mission statements. Frontiers reserves the right to guide an out-of-scope manuscript to a more suitable section or journal at any stage of peer review.
