Faculty Collaboration Database

Utilisation of early intervention services in young children with hypoplastic left heart syndrome. Cardiol Young 2018 Jan;28(1):126-133

Date

08/30/2017

Pubmed ID

28847329

Pubmed Central ID

PMC5815511

DOI

10.1017/S104795111700169X

Scopus ID

2-s2.0-85038413629 (requires institutional sign-in at Scopus site)   28 Citations

Abstract

OBJECTIVE: Children with hypoplastic left heart syndrome are at a risk for neurodevelopmental delays. Current guidelines recommend systematic evaluation and management of neurodevelopmental outcomes with referral for early intervention services. The Single Ventricle Reconstruction Trial represents the largest cohort of children with hypoplastic left heart syndrome ever assembled. Data on life events and resource utilisation have been collected annually. We sought to determine the type and prevalence of early intervention services used from age 1 to 4 years and factors associated with utilisation of services.

METHODS: Data from 14-month neurodevelopmental assessment and annual medical history forms were used. We assessed the impact of social risk and geographic differences. Fisher exact tests and logistic regression were used to evaluate associations.

RESULTS: Annual medical history forms were available for 302 of 314 children. Greater than half of the children (52-69%) were not receiving services at any age assessed, whereas 20-32% were receiving two or more therapies each year. Utilisation was significantly lower in year 4 (31%) compared with years 1-3 (with a range from 40 to 48%) (p<0.001). Social risk factors were not associated with the use of services at any age but there were significant geographic differences. Significant delay was reported by parents in 18-43% of children at ages 3 and 4.

CONCLUSION: Despite significant neurodevelopmental delays, early intervention service utilisation was low in this cohort. As survival has improved for children with hypoplastic left heart syndrome, attention must shift to strategies to optimise developmental outcomes, including enrolment in early intervention when merited.

Author List

Mussatto KA, Hollenbeck-Pringle D, Trachtenberg F, Sood E, Sananes R, Pike NA, Lambert LM, Mahle WT, Goldberg DJ, Goldberg CS, Dunbar-Masterson C, Otto M, Marino BS, Bartle BH, Williams IA, Jacobs JP, Zyblewski SC, Pemberton VL

Author

Kathleen Mussatto Ph.D. Associate Professor in the School of Nursing department at Milwaukee School of Engineering

MESH terms used to index this publication - Major topics in bold

Cardiac Surgical Procedures
Child
Child, Preschool
Early Medical Intervention
Female
Heart Defects, Congenital
Heart Ventricles
Humans
Infant
Logistic Models
Male
Neurodevelopmental Disorders
Neuropsychological Tests
Prospective Studies
Risk Factors