PROMIS fatigue scores are moderately correlated with heart failure severity in pediatrics.

Background: Patient-reported outcome measures (PROMs) correlate with heart failure (HF) severity among adults and are adjunct tools in clinical care. Limited data exist regarding the validity of PROMs in pediatric HF. Patient-Reported Outcome Measurement Information System (PROMIS) Pediatric Fatigue correlates with HF severity, measured by the New York University Pediatric Heart Failure Index (NYU PHFI).

Methods: Children ≥8 and <18 years old were enrolled prospectively at 4 hospitals, from September 2019 to February 2023, while receiving inpatient HF care. NYU PHFI and pediatric self-report PROMIS measures were administered to inpatient and outpatient patients. PROMIS measures: Mobility, Anxiety, Depressive symptoms, Peer relationships, and Fatigue (primary outcome). Paired -tests compared PROMIS and NYU PHFI scores across time. A mixed-effects model generated correlation coefficients.

Results: In the 41-patient cohort, 20 (48.8%) were discharged without ventricular assist device/transplant, 18 completed inpatient and outpatient assessments. Mean PROMIS Fatigue -scores improved: 58.1 ± 12.9 to 48.9 ± 16.9;  = 0.007. Clinically meaningful improvements were observed in other PROMIS -scores, except Peer relationships. NYU PHFI scores improved: 13.3 ± 2.6 to 7.8 ± 3.4;  < 0.001. PROMIS Fatigue and NYU PHFI moderately correlated (r = 0.5; 95% confidence interval 0.3, 0.6).

Conclusions: PROMIS Fatigue -scores moderately correlated with HF severity in children suggesting that Fatigue could be useful in longitudinal monitoring and clinical trials.