the 42 bulletin
Measuring outcomes in Congenital Heart Disease Every Tuesday morning the department of Congenital Heart Surgery at Texas Children’s Hospital (TCH), the former surgeon-in-chief used to conduct rounds intended for trainee congenital heart surgeons, paediatric cardiologists and medical students. Marisa Gambarini, Foundation Year 1 Doctor, Ealing Hospital, London North West Healthcare NHS Trust
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ach session evolves around a case that represents a learning opportunity about the (mis) management of the presented patient and leads to a reflection about the current thoughts and future directions of care in similar clinical situations. In one of the rounds I attended, a case of a neonate with a very complex congenital heart problem and other congenital malformations, opened a discussion about the possible treatments and interventions before the surgeon posed the uncomfortable question – but what about the possible outcomes? What can we tell the baby’s parents to expect? And we could add – how do we know that what we are telling the parents is true? Where only decades ago ‘blue babies’ had a very poor chance of survival, at least in the developed world, we now have an armamentarium of treatments available for children with congenital heart disease (CHD). The survival of these children has improved dramatically, however reporting of outcomes has, until recently, been largely limited to research studies. This lack of readily available outcome data is particularly important when dealing with patients with complex
CHD, where the burden of mortality and morbidity is the highest. Considering the above questions, it becomes evident that to be able to give answers about outcomes we need to first decide which outcomes are relevant and then develop simple yet reproducible measures to monitor them. Many institutions in North America and Europe where congenital heart surgery is performed are now part of The Society of Thoracic Surgeons and The European Association for Cardio-Thoracic Surgery databases that aim to capture outcomes of congenital heart surgery. However, reports from such datasets continue to
are important to patients, to ensure that we are providing adequate care at different levels instead of maximizing one outcome at the expense of another. At TCH, Dr Fraser championed the continuous use of outcome and processes measures not only to enhance discussion with families but also to improve performance, as this allows the programme to reflect on current practices based on available data and act upon it to improve the care of patients with CHD. The outcome measures at TCH include mortality, neurodevelopmental outcomes and cardiopulmonary bypass times. The case volume of surgical and catheter-based procedures and lesion-specific mortality rates are regularly updated and readily available to the public on the TCH website. Not surprisingly, TCH was ranked top in the nation by US News & World Report in Pediatric Heart Care and Heart Surgery in 2017-18. However, there remains a wide variability in outcomes of CHD across US institutions. Joint efforts by the Society of Thoracic Surgeons and Congenital Heart Surgeons’ Society in the US released a set of ‘Quality Measures for Congenital and Pediatric Cardiac
“Where only decades ago ‘blue babies’ had a very poor chance of survival, at least in the developed world we now have an armamentarium of treatments available for children with congenital heart disease.” focus on mortality data and case volume which although clearly important, do not adequately capture the current efforts to achieve outcomes beyond the 30-day or in-hospital survival. Not limited to CHD, Professor Porter from the Harvard Business School proposed a generic threetier hierarchy of outcomes (figure 1) to include survival and other outcomes that
