Outcomes Research

Cardiac Outcomes Research

Outcomes research at the Heart Institute at Cincinnati Children's Hospital Medical Center seeks to better understand the end results, as well as the short and long term consequences of treatment and surgical interventions of children and adults with congenital and acquired heart disease. This pioneering research focuses on measures that impact patients’ daily lives. For patients with chronic heart conditions, the research closely tracks the impact of the disease on quality of life as well as mortality.

The goal of outcomes research at the Heart Institute is to strengthen our processes and quality of care with the underlying commitment of improving patients' lives long-term.

Quality of Life Outcomes Research Group

Led by Bradley S. Marino, MD, MPP, MSCE, the Quality of Life (QOL) Outcomes Research Group seeks to characterize the relationship between genetic, demographic, clinical and neuro-developmental, psychosocial and physical morbidity factors and QOL. Identifying these relationships allows clinicians to modify the medical care delivery system to significantly improve the lives of children with congenital and acquired heart disease and promote their future success.

Research Goals

The aims of this research program include but are not limited to:

Create and validate a disease-specific pediatric cardiac QOL questionnaire to quantitate QOL and describe the variation in QOL across the pediatric cardiac population
Identify demographic and clinical predictors of poorer QOL across (i.e. Surgical vs Non-surgical; CHD vs AHD) and within (i.e. Fontan, TGA, TOF) pediatric heart disease subgroups
Identify modifiable neuro-developmental, psychosocial, and physical morbidity factors that are associated with a poorer QOL
Assess whether genetic polymorphisms that may impact neuro-developmental outcome are associated with poorer QOL
Create predictive models that identify impact factors associated with a poorer QOL to allow for new early opportunities for prevention and intervention.

Current Studies

Current research underway includes:

The multi-center, multi-national Pediatric Cardiac Quality of Life Inventory Testing Trial in the United States (11 centers) and England (three centers)
Predictors of Lower QOL in Children and Adolescents with Surgically Palliated or Repaired CHD
The Impact of Neurodevelopmental Outcomes on QOL in the Pediatric Cardiac Population
Psychosocial Morbidity Factors Mediate the Relationship Between Disease Complexity and QOL in Children and Adolescents with CHD
The Impact of Apolipoprotein E Genotype on Neurodevelopmental Outcome and its Role in QOL in the Pediatric Cardiac Population

By understanding the modifiable factors that impact QOL, care providers can begin to risk stratify the pediatric cardiac population and intervene to maximize the future potential of this high risk group.