Neurocognitive deficits (NCDs) are prevalent in young adults with moderate and severely complex adult congenital heart disease (ACHD), and it is essential to integrate neurocognitive assessments into routine ACHD care, according to the MINDS-ACHD study published Aug. 25 in JACC.

Scott Cohen, MD, et al., conducted the MINDS-ACHD prospective study using data collected from October 2020 through May 2023 from 14 North American ACHD centers to examine the prevalence and risk factors associated with NCDs in patients aged 18-30 years with moderate and severe complex ACHD.

A total of 467 study participants were categorized into four diagnostic groups: 82 with dextro-transposition of the great arteries (d-TGA), 123 with tetralogy of Fallot, 132 with a single ventricle and 130 with other moderate to severely complex CHD. Their mean age was 25 years, 56% were women, 81% were White and 78% had NYHA functional class I. Demographics were similar across the four groups, except for a higher prevalence of men in the d-TGA group.

Results showed that 34% scored at least 1 standard deviation below the normative mean on the objective measurement using the cognitive battery of the National Institutes of Health [NIH] Toolbox. Additionally, 22% scored at least 1 standard deviation below the normative mean on the subjective measurement using the NeuroQOL Item Bank v2.

NYHA functional class and education functional class were independently associated with NIH Toolbox scores, while education, BMI, atrial arrhythmias, depression and anxiety were independently associated with NeuroQOL scores.

In what the authors say is the largest prospective pilot study to assess both objective and subjective NCD, the findings "underscore the critical need for integrating neurocognitive assessments into the routine care of adults with CHD," they write. They note that early identification of these deficits can inform clinical practice guidelines for proactive detection and management of NCDs, as well as paves the way for targeted interventions to improve outcomes and quality of life.

This study "fills an enormous gap in knowledge and highlights a real public health issue in the CHD population," write Shabnam Peyvandi, MD, and Roberta G. Williams, MD, MACC, in an accompanying editorial comment. "Although cross-sectional in nature, the study is a call to action – to integrate neurodevelopmental and mental health care from the start in early life and extending through adult life for patients with significant CHD."