Value Based Care for Children with Congenital Heart Defects in Lower Middle-Income Country

Background. Congenital heart disease (CHD) is the most common pediatric non-communicable disease. The treatment involves performing surgery or an intervention in the cardiac catheterization laboratory (CCL) to treat or palliate the congenital problem in the heart. The importance of registries for collaborative quality improvement has been overlooked in low/middle-income countries (LMIC). Aga Khan University Hospital (AKUH) in Pakistan joined the Congenital Cardiac Catheterization Project on Outcomes Quality Improvement (C3PO-QI) in March 2017 with the goal of leveraging international collaboration to improve patient care and institutional standards. This collaborative resonated with the overall mission and vision of AKU Pediatric Service Line, which is to develop the pro-gram around quality improvement.

Methods. The C3PO-QI key driver-based approach was used, with certain modifications, for process reengineering in AKUH’s congenital cardiac catheterisation laboratory (CCL) to reduce radiation exposure during cardiac catheterisation procedures (the primary outcome of C3PO- QI). Improving staff engagement by educating them and standardising procedural documentation were the principal goals of the process re-engineering. An IPU was created to deliver care in the CCL. The IPU consisted for an interdepartmental team of cardiologist, anaesthesiologist, technicians, sonographers, and trainee physicians. Outside the CCL the team consisted of finance department, emergency room staff , outpatient pediatric cardiology, play therapist, behaviour psychologist, a HRQOL(health rated quality of life outcome) specialist and inpatient ward team. Data survey was used to assess staff knowledge, attitude and practice before and after the initiative. Additionally, case demographics and outcomes were compared between AKUH and C3PO-QI centres. The following outcome metrics were used to assess the interventions implemented for the described key drivers: (1) documentation of radiation protection; (2) staff radiation protection; (3) operator techniques (for radiation practices optimisation); (4) self-interest and knowledge of CCL staff (staff education optimisation); and (5) catheterisation report documentation (documentation optimisation). Outcomes were defined as adequate and inadequate.

Results. A total of 106 congenital cardiac catheterisations were performed at AKUH. The median age of catheterisation was 4 (2.0, 12) years. There was no mortality during the study period. Out of the 10 (10%) morbidities, 4 (4%) were preventable and an equal number were possibly preventable. There was an increase in appropriate recording of radiation surrogates (0%–100%, p=0.00) and in the percentage of cases that met the established benchmark of ‘Ideal documentation’ (35% vs 95%, p=0.001). There was also an increase in self-reported staff interest during the case (25% vs 75%, p=0.001). The frequency of adverse events were the same between AKUH and collaborative sites. Collaborative efforts between developed and LMIC CCL are significant in advancing system-level processes. This is the first time that QI efforts have been made to measure and decrease radiation exposure.

Conclusion. The collaborative included only 106 cases but has had far reaching butterfly effect on the Pediatric Service Line. The changes created in the catheterization laboratory have filtered much beyond the CCL. The initiative caused significant staff engagement who then have added other pro-jects beyond the requirements of the collaborative. The focus on HRQOL and TOC projects have become patient centred care. This is an example of an emergence of a new organization in a complex adaptive system (CAS). This represents the co-evolution of a new culture and new manpower that is driven now by patient centred care, a novel concept in LMIC. Ambiguity and paradox abound in complex adaptive systems which use contradictions to create new possibilities to co-evolve with their environment. This project exemplified this co-evolution of an entire service line.