Call for a disease-specific patient-reported outcome tool in adult congenital heart disease.
Those who care for patients with adult congenital heart disease (ACHD) need a valid and sensitive measure to better quantify the effect of ACHD on patients’ health status, their symptoms, function, and quality of life (QOL). These insights are critical in evaluating the success of novel treatments, monitoring patients over time, and comparing treatment success across providers as a foundation for quality improvement.1 Given the unique and myriad manifestations of various forms of ACHD, generic QOL measures are likely inadequate and the time has come to create an ACHD-specific patient-reported outcome (PRO) tool.

The prevalence of ACHD is expanding rapidly in the developed world. As a result of medical and surgical advances over the last half century, patients who previously would have succumbed to their cardiac abnormality in early childhood now live well into adulthood.2,3 Currently, it is estimated that there are more adults living in the United States with congenital heart disease than there are children.4 Although medical and surgical advances have led to dramatic improvements in survival, these patients are not cured and live with various limitations and symptoms that require ongoing monitoring and treatment.

The growth of this unique population of patients with chronic heart disease creates a need for new research strategies to optimize care and improve outcomes.5 Like other patients with chronic heart disease, patients with ACHD have been demonstrated to have rapidly rising rates of hospitalization and medical resource utilization.6,7 Current data support the notion that appropriate disease-specific care improves both health outcomes and cost-effectiveness in populations with acquired heart disease.8–12 The recent demonstration that specialized ACHD care may result in more positive outcomes for ACHD patients suggests that these patients may benefit from novel disease-specific pharmacological and device therapies analogous to …