Early Outcomes of the CHD LIFE Program Long-Term Developmental Care Pathway for High-Risk Children With Congenital Heart Disease

Abstract

Background: Long-term developmental surveillance is recommended as standard clinical care for at-risk children with congenital heart disease (CHD) undergoing early open-heart surgery (OHS). In 2018, a Queensland-wide developmental care pathway for children post OHS <12 months was consumer co-designed to address high cost and resource challenges experienced by centralised hospital-based programs. Methods: A multimodal approach to state-wide healthcare stakeholder engagement was utilised to support pathway implementation. A centralised database was established to enable longitudinal data collection from health records, and support implementation and evaluation. Parental education using tailored resources was delivered. At hospital discharge, infants were referred to local primary care +/- additional developmental services. Results: Engagement with all Queensland Hospital and Health Services accessed by pathway eligible infants was established. Between May 2018-Dec 2019, 128 eligible infants survived to hospital discharge. 104 infants (male, 56.7%) were consented for data collection. Median age at surgery was 50 days (range, 0-322 days). Of 67 infants due 6-month developmental surveillance, developmental service access was identified for 44 (66%). Seventeen (25%) received secondary-level screening with the Ages and Stages Questionnaire (ASQ-3) at median age 6.5 months (range, 5.7-7.4). Of 57 infants due 12-month surveillance, access was identified for 39 (68%). Eleven (19%) received developmental screening with ASQ-3 (n=9) or Bayley-III screening test (n=2) at median age 12.3 months (range; 11.2-13.7). Conclusion: Long-term neurodevelopmental care is a national priority for Australian children after early OHS. Strategies to maximise uptake of locally delivered surveillance models including evaluation of healthcare provider and parental experience are warranted.L20085025002020-12-09 <br />