Abstract 14041: Caring for Infants With Complex Single Ventricle: Impact on Families
Objective: Outcomes for infants with single ventricle (SV) heart defects have steadily improved in recent decades, but there is still significant mortality and morbidity during the interstage period between stage 1 Norwood hospitalization discharge and stage 2 palliation at 4-6 months of age. The impact on families during this period of infant home surveillance is unknown. The aim of this study was to evaluate parental quality of life (QOL) and family functioning among parents of infants with SV during the interstage period.
Methods: Parents (n= 32) completed the PedsQL Family Impact Module (FIM) via a web link or by telephone at 6 weeks post Norwood discharge and again prior to Stage 2 surgery. Higher scores indicate less negative impact. Data were compared to published norms for a Midwestern community sample of parents.
Results: Median age at Norwood was 5 days (range 1-50) with a median hospital length of stay (LOS) of 28.5 days (range 14-102). Total FIM, family functioning, and parental QOL scores were not significantly lower than community norms. Across scales however, the SV parents had significantly worse scores related to worry (64.4 ± 20.6 vs 78.1 ± 20.1, p<.001), communication (74.0 ± 23.5 vs 81.9 ± 17.7, p=0.01) and daily activities (53.6 ± 30.2 vs 63.2 ± 22.5, p=0.02) at 6 wks. Interestingly, the mean scale score for family relationships was significantly higher in the SV parents than community norms at 6 wks (82.7 ± 14.4 vs 67.0 ± 19.4, p<.001) and pre-Stage 2 (76.3 ± 21.6 vs 67.0 ± 19.4, p=0.01). There was no significant change in any FIM scale scores between 6 wk and pre-Stage 2 assessments except parental physical functioning scores declined (p=0.004).Total FIM, including parental QOL and family functioning scores, were not significantly associated with Norwood hospital LOS. Most parents (97%) reported daily monitoring of their infant’s oxygen saturation at home was helpful and 22% felt monitoring decreased their stress.
Conclusion: Care of an infant with SV has a significant impact on families throughout the interstage period with improved outcomes related to supportive family relationships. Home monitoring by parents with ongoing assessment of family concerns by healthcare providers may further support families caring for infants with single ventricle.
Author Disclosures: K. Uzark: None. J. Sagi: None. S. Yu: None. J. Donohue: None. A. Valentini: None. V. Zitterman: None. S. Gelehrter: None.
- © 2015 by American Heart Association, Inc.