How do we define success in pediatric cardiac care?

Do you put perimembranous VSD devices?, Do you have ECMO?, How many ASOs are done at your center?-such are the familiar refrains in pediatric cardiology conferences and perhaps one is valued accordingly. The practice of pediatric cardiac care is labor intensive, technology driven, and highly effective therapy for children with heart disease. The success of treatment is obvious and steadily improving. In a bid to standardize results and facilitate comparisons, several methods are being envisaged. The nomenclature is standardized,[1] and to account for the case mix, the results of surgery are constructed on the basis of complexity of the procedures such that no one is unfairly criticized or praised. The international data base of thousands of patients, mostly from Europe and North America, has been analyzed utilizing various yardsticks. The RACHS-1 (Risk Adjustments in Congenital Heart surgery-1) and Aristotle score (named after the Aristotelian principle of expert consensus when data are lacking) are well known examples of such performance measure scores,[23] and are increasingly accepted modes of comparisons. The congenital heart diseases are stratified into six groups of increasing complexity in RACHS-1. In the Aristotle basic score, the anticipated mortality, morbidity, and technical difficulty are scored according to the disease. For example, an atrial septal defect is scored 3, a transatrial repair of TOF 8 and a Norwood procedure is scored 14.5 based on the consensus of experts. Further, recognizing other patient-related factors, a comprehensive complexity score[3] is extended to include other procedure-dependent and independent variables. These are thoughtful pragmatic attempts to improve the quality of care, and their strengths and limitations are being critically analyzed and debated.[45] The assertion is that the complexity of a particular procedure for a given patient is constant anywhere in the world, such that performance may be evaluated by the equation: Performance = Complexity × Outcome. This may be true technically, but such comparisons do not reflect the complete picture. The result of arterial switch operation is a success if the child survives the operative procedure for this very threatening disease; the success is less if the child has ADHD (attention deficit and hyperactivity disorder) on follow-up, and perhaps it is even muted if the stress of the entire process caused bankruptcy or divorce of the parents. Of course, this issue of quality considerations and comparisons is a nascent and evolving field. Similar database and outcome analysis is also being applied to interventional cardiology procedures, and for critical care units as well.[67] Again, the device closure of VSD could be a technical success, but what if the VSD was compatible with a normal life anyway.

But there is another blind spot.

What proportion of patients with heart disease has an access to your center is never asked. CHD occurs with regular impunity across the globe @ 8/1000 or so, with some regional variations in the pattern of the disease. Eighty percent of the births occur in areas of the world with nil to scarce facilities for treatment of CHD. The oft-quoted situation in many parts of the world like Africa, Bangladesh, India, Pakistan, Indonesia with high birth rates, high infant mortality and poor resources hardly needs to be reiterated. Despite competing causes of neonatal mortality in these countries, the absolute number of children dying from heart disease is much more than the rest of the world. Medical care is fractionated in these countries with little overall regulations. Diverse practice patterns prevail with public and private hospitals each trying to serve the population in their best possible ways. The question of access and comparisons becomes relevant then. While no one would wish to lower the quality bar with the excuse of lack of infrastructure, the comparative statistic needs a dose of realism, in both international and local comparisons. While access and excellence are not inversely related, but the force of sheer logistics play a part in the real world settings for many things that matters.

Access without excellence is void, but excellence without access (or very limited access) is a pretense. Which is more successful center – one with a 2% mortality of TOF and catering to a population of less than 2%, or one with a mortality of 4% and accessible to 30% of the population? While no one center alone can solve the problem of the population, such a hypothetical question raises many important, even if somewhat unsolvable issues. The tertiary care centers in large parts of the world are overburdened and face unique problems of their own which is not translatable in the standard scores. Each center must think globally, but act locally to solve the immediate concerns and priorities. In doing so, they need algorithms which may not fit the standard beaten track. It is as if we live in two (or many) parallel worlds with the ability to see each other, but only occasionally shake hands. There are several related issues responsible for this state of affairs. High cost of care encourage limited access and “Boutique medicine,”[8] and inappropriate use of technology hikes the cost.[9] A right choice of technology is very important in the entire gamut of issues.

While a technically competent pediatric cardiologist, surgeon, or anesthetist is not any more likely to be socially insensitive, sometimes the primary pursuit of technology becomes an end in itself, bereft of relevance and perspective of one's own population and priority. The term “a technologically competent and socially sensitive medical professional” must not be an oxymoron. Access, equity, and excellence and not mere “technical excellence” should define success.