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Socioeconomics and Family Structure Affect Outcomes In Single Ventricle Congenital Heart Disease

Saturday, October 20, 2012: 10:45 AM
Room 275-277 (Morial Convention Center)
Elizabeth M. Pontarelli, MD1, Catherine J. Goodhue, CPNP1, Shazia Bhombal2, Shalini S. Sharma, MD, MPH3, Jeffrey Upperman, M.D.4, Henri R. Ford, MD, MHA1, Gerald Bushman, MD1, David Epstein, MD5, Elizabeth De Oliveira, MD6 and James R. Pierce7, (1)Pediatric Surgery, Children's Hospital Los Angeles, Los Angeles, CA, (2)Center for Fetal and Neonatal Medicine, Division of Neonatal Medicine, Children's Hospital Los Angeles, Keck School of Medicine, University of Southern California, Los Angeles, CA, (3)Anesthesia, Los Angeles County Hospital, USC+Keck School of Medicine, Los Angeles, CA, (4)Pediatric Surgery, Childrens Hospital Los Angeles, Keck School of Medicine, USC, Los Angeles, CA, (5)Children's Hospital Los Angeles, Los Angeles, CA, (6)Cardiology, Children's Hospital Los Angeles, Los Angeles, CA, (7)Division of Pediatric Surgery, Children's Hospital Los Angeles, Los Angeles, CA

Purpose: Psychosocial, sociocultural, and socioeconomic variables play a significant role in the outcomes of surgical disease, and while family structure has been evaluated in the social sciences, its clinical implications are not well known.  Single ventricle (SV) congenital heart disease requires a series of palliative surgical procedures and multiple hospital admissions.  Our goal was to evaluate the impact of family and socioeconomic contributions to treatment progression and survival in patients with single ventricle disease. We hypothesized that SV infants/children with single or separated, unemployed, and uninsured caretakers with a primary language other than English had higher mortality between surgical palliative stages, compared to infants/children with more than one caretaker who is employed, has health insurance, and speaks English.

Methods: After IRB approval, all medical records between July 2003 and July 2010 at a single, tertiary care, university affiliated children’s hospital were reviewed for patients with a diagnosis of single ventricle. Social work notes were used to identify family structure, parental employment, insurance, and primary language.  Outcomes included survival to each stage of repair (Stage I, Stage II – Bidirectional Glenn, and Stage III – Fontan completion) and overall survival.  Data were analyzed using Chi-square analysis and multivariate logistic regression.

Results: Of 421 patients with SV disease, 99% had parents as guardians, (86% together, 5% separated, 8% single parent).  Patients with separated parents had decreased survival between Stage I and Glenn (p=0.014), as well as between Glenn and Fontan (p<0.0001). In fact, separated parents led to a three-fold increase in mortality over single parents and couples. Unemployment of both parents also led to decreased survival between Glenn and Fontan (p=0.002).  Additional adults, usually grandparents, were living in 22.8% of households.  Survival was similar after Stage I and Glenn, but patients with additional adults had worse survival after Fontan (p=0.005).  In general, patients with English as their primary language had better outcomes than secondary and non-English speakers, especially in survival to Fontan (p=0.058).  Neither number of siblings nor type of insurance had an effect on survival at any stage. 

Conclusion: The ongoing care of an infant with single ventricle disease is demanding.  Families with additional challenges such as multiple households, multiple caretakers, and language barriers may affect the child’s chance of long-term survival.  This effect is most noticeable between Glenn and Fontan, which is generally accepted as the safest periods from a physiologic standpoint. High-risk families such as those with separated parents, additional family members at home, or those who speak a primary language other than English may benefit from additional resources to improve patient survival and treatment progression.  Family structure and socioeconomics must be taken into account to improve long-term outcomes in these fragile patients.