Prevalence and Risk Factors for Developmental Delay in Congenital Heart Disease Patients

Background: Children with congenital heart disease (CHD) are at greater risk for developmental delays (DD). Identification of DD and early interventions are known to improve long term outcomes. The Ages and Stages Questionnaire (version 3) (ASQ-3) assesses DD across 5 domains, communication, gross motor, fine motor, problem solving and personal social. This study aims to evaluate the prevalence of ASQ-3 identified DD and factors associated with DD.

Methods: Patients who received an ASQ-3 prior to any cardiac surgical intervention from 2019-2021 were included. The ASQ-3 was administered at outpatient surgical consultation or inpatient, if specific DD risk criteria were met. DD was defined by an ASQ-3 score for any domain below the at-risk cutoff. Associations between DD, patient characteristics, clinical factors, and perioperative factors were analyzed utilizing descriptive, univariate, and multivariable statistics. Age at screening was log transformed for inclusion in multivariable models. Patients with a documented DD prior to screening were excluded from analysis.

Results: A total of 87 patients underwent ASQ-3 screening pre-operatively, of whom 19 (22%) had a prior recognized DD and were excluded from analysis resulting in a final cohort of 68 patients. The median age screening was 7 [IQR: 3-17] months. Among the cohort, 6 (9%) were hospitalized for > 4 weeks and 27 (40%) had a cyanotic CHD lesion (Table 1). Forty (59%) of patients screened positively for a DD. ASQ-3 detected DD was most prevalent in the gross and fine motor domains, with 21 (31%) and 24 (35%) patients meeting criteria, respectively.

Patients who exhibited a DD across any of the 5 ASQ-3 domains were more likely to have been hospitalized for >4 weeks (15% vs. 0%, p=0.039) and have a cyanotic CHD lesion (53% vs. 21%, p=0.020). No differences were detected across other demographic and clinical characteristics. Adjusting for age at screening attenuated the association between hospitalization and ASQ-3 detected DD (p=0.991). Whereas, the association between ASQ-3 detected DD and cyanotic CHD lesion remained (p=0.029). The odds of a communication (OR=20.5, 95%CI:(2.7-266.2)), fine motor (OR=11.6, 95%CI:(1.7-230.9)), and problem-solving DD (OR=25.4, 95%CI:(3.0, 619.2)) were significantly higher among patients who had a prolonged hospitalization, adjusting for age at screening. Cyanotic CHD lesion was not significantly associated with ASQ-3 domain specific delays. (Table 2)

Conclusion: The ASQ-3 detected a high prevalence of DD among CHD patients screened pre-operatively. Our small sample size precluded us from exploring the relationships between hospitalization, DD and other clinical factors. However, our findings indicate that patients who have a prolonged hospitalization should receive focused developmental screening and directed interventions. Notably, patients with a more severe CHD lesion are more likely to screen positively for a DD.