Increasing Reliability and Timeliness of Appropriate Genetic Counseling Consultation in the Pediatric Cardiac ICU: Single-Center Quality Improvement Study, 2020-2024.

OBJECTIVES

Cardiovascular genetics evaluation in the cardiac ICU (CICU) is essential for patient and family care. However, engaging genetic counseling (GC) consultation by frontline care teams in the CICU is challenging. This quality improvement (QI) project aimed to: 1) increase GC consultations for eligible CICU patients, 2) decrease time from admission to consultation, and 3) assess whether changes aligned with parental preferences.

DESIGN

Single-center QI study, from January 2020 to June 2024.

SETTING

Large tertiary care children's hospital in the United States.

PATIENT COHORT: Two hundred sixty-five patients with congenital heart defect (CHD).

INTERVENTIONS: None.

MEASUREMENTS AND MAIN

RESULTS

In 2022, we introduced a standardized admission process for admissions with CHD, including: electronic medical record (EMR) notifications, accurate diagnostics, improved referral workflow and collaboration with fetal cardiology clinic, and parent surveys. A before-vs.-after analysis showed an associated increase in GC consultation from 76% to 94%; the mean time from admission to consultation decreased from 6 to 3 days. Post-introduction, there was reduced variability and less delay compared with pre-implementation. A needs assessment survey via a parent-support group had 151 responses, which indicated that 83% of families wanted genetic testing. Sixty-nine percent of families wanted to discuss genetic testing through in-person consultation during their child's initial inpatient admission. Thirty-two percent of families preferred contact as soon as possible and 47% preferred contact before cardiac surgery. Last, 75% of parents with a fetal diagnosis of CHD expressed interest in discussing testing while pregnant.

CONCLUSIONS

In our pre- vs. post-introduction of a QI intervention, we found that eligible CICU patients are more reliably and promptly identified for GC consultation by leveraging the EMR and partnering with CICU staff and fetal cardiology. Parents supported genetic testing, typically delivered through integrated GC consultations in both the fetal and inpatient settings.