Design and initial results of a programme for routine standardised longitudinal follow-up after congenital heart surgery

Abstract

Standardised follow-up data can be obtained on the majority of children undergoing benchmark operations. Ongoing efforts to support automated electronic systems and integration with registry data may reduce resource needs, facilitate expansion across centres, and support multi-centre efforts to understand and improve long-term outcomes in this population.

Development of a Congenital Heart Surgery Composite Quality Metric: Part 2—Analytic Methods

“…Alternative approaches were also discussed (see Part 1), and it was agreed that weighting complications in relation to their effect on longer-term survival or quality of life would be desirable; however, adequate data in this area do not currently exist [1]. Efforts are underway to better capture these data moving forward [4]. …”

“…Finally, although the current composite measure provides a more comprehensive view of short-term performance, further efforts are needed to support more widespread collection of important longer-term disease-based rather than procedural-based outcomes data to continue to foster a more complete understanding of quality and improve our ability to assess outcomes most important to patients and families [4]. Such efforts could also inform more empiric methods for the inclusion and weighting of composite measure components (eg, certain complications) in the future.…”

Cardiac Networks United: an integrated paediatric and congenital cardiovascular research and improvement network

“…Although the focus of our data integration has started with clinical registry data, the founding organisations of Cardiac Networks United have initiated efforts to use other emerging data sources. For example, PC4 has successfully merged clinical data from their registry with real-time physiologic data captured by ICU monitors and devices to facilitate predictive analytics and with a patient-reported outcomes module that captures longitudinal annual follow-up from patients and families regarding survival, quality of life, and other important morbidities 25 . A planned future project includes merging data from CNOC and PC4 to understand ICU factors and physiologic profiles impacting neurodevelopmental outcomes.…”

Development of a Congenital Heart Surgery Composite Quality Metric: Part 1—Conceptual Framework

“…Further, in-hospital deaths include deaths in the hospital performing the operation, or in another acute care facility to which the patient is transferred, or in a long-term care facility up to 6 months after transfer [8, 12]. It was acknowledged that an understanding of longer-term disease-based (rather than procedure-based) outcomes would be ideal, and that ongoing efforts to capture this information may allow for incorporation of such metrics in the future [25]. …”