Health-related quality of life and disease impact in complex congenital heart disease and ECLS survivors-ongoing follow up assessment

Abstract

Background: Studies of the Health-Related Quality of Life (HRQoL)for children with congenital heart disease(CHD)are typically cross-sectional with inconsistent results regarding the role of disease severity. Information regarding theHRQoL of children that have survived ECLS exists is very limited. Additionally, parents of children with chronic health problems are at risk of impaired HRQoL. Method: Neonates born after January 1, 2013 undergoing Arterial Switch (ASO) or Norwood procedure and children who received ECLS were enrolled prospectively into the Queensland Paediatric Cardiac Service Neurodevelopmental Long term Follow up Program, with 21 eligible for assessment in the first year. HRQoL was assessed using the Paediatric Quality of Life (PedsQL) Infant Scales; Parental HRQoL and disease impact was assessed using the PedsQL Family Impact Scale. HRQoL was not assessed in the inpatient setting. Results: 18 assessments were undertaken at 6 months of age and 7 assessments at 12 months. Parents of children who have undergone ASO report a similar HRQoL for their children as parents of children with more complex CHD who have undergone the Norwood procedure, at both 6 and 12 months of age. Children requiring ECLS are reported to have a lower HRQoLat both assessments. Parents of childrenwhoundergo the Norwood procedure or survive ECLS report a persisting lower HRQoL for themselves and greater disease impact on the family than the parents of children undergoing ASO. Conclusion: Longitudinal HRQoL assessment will enable greater understanding of most at risk groups and inform service planning and targeted interventions.L721035522015-12-10 <br />