Communication chaos: How incomplete and conflicting information prevents improved outcomes for patients with pediatric and congenital cardiac disease (and what we can do about it)

Abstract

Congenital heart disease (CHD) occurs in approximately 8 of 1,000 births, with approximately one-third requiring invasive treatment or resulting in death within the first year of life. Parents of children with complex CHD need timely and accurate information regarding the diagnosis, treatments, surgical outcomes, and protocols of follow-up to provide the best care for their children. Decision-making at the time of diagnosis is especially critical; hospital choice is a major predictor of survival, yet most parents do not have access to data about surgical outcomes upon which to choose the most appropriate facility for their child. The information received from physicians, the Internet, and other sources is highly variable, unverifiable, and often inaccurate, further complicating the process of decision-making. Despite the limitations and concerns of publicly reporting data about surgical outcomes, we argue that this information must be accessible to parents at diagnosis to ensure true informed consent and to achieve best outcomes. Improved communication throughout the lifetime of the patient is also needed to ensure awareness and treatment of potential co-morbidities associated with CHD. The Internet provides an unprecedented opportunity for improved education of patients and their parents as well as collection of data regarding issues related to complications and quality of life that are not yet well understood in this population. These methods of communication and collection of data are critical in achieving the best long-term outcomes for patients with complex congenital heart disease.