Pediatric cardiomyopathy as a chronic disease: A perspective on comprehensive care programs

Substantial numbers of children with cardiomyopathy are now surviving into adulthood, making it essentially a chronic disease. As a chronic condition, it may be best treated through comprehensive, multidisciplinary treatment programs. Such programs have improved health outcomes and reduced costs in managing other pediatric chronic diseases and heart failure in adults, but the treatment and cost implications of programs for managing pediatric cardiomyopathy are unknown. We investigated the treatment and cost implications of establishing such programs by reviewing cost-effectiveness studies of similar programs, estimating the current inpatient costs of this diagnosis, and interviewing experts in the field about the need and desirability of these programs. According to our findings, comprehensive pediatric heart failure programs do exist, but they have not been evaluated or even described in the literature. Consensus among experts in the field is that comprehensive chronic care programs are highly desirable, and similar programs have reported tremendous cost savings through early and intensive management: the return on investment has been as high as 22 to 1. Another study reported that mean length of stay decreased from 83.9 to 10.6 days, mean annual admissions decreased from 2796 to 1622, and median hospital charges decreased from $26.1 million to $14.6 million. In conclusion, limited experience and strong circumstantial evidence suggest that, despite substantial costs, comprehensive multidisciplinary pediatric heart failure programs would be cost-effective and beneficial to patients, families, and institutions alike.