Comparison of a Cardiac Specific Versus a General Instrument to Assess Health-Related Quality of Life 4-5 Years After Cardiac Surgery in Early Infancy

Background We aimed to compare health-related quality of life (HRQL) using a disease-specific and a generic instrument in children after complex cardiac surgery in early infancy. Methods A prospectively followed inception cohort of children having complex cardiac surgery at age ≤6 weeks had HRQL assessed at age 4-5 years using Pediatric Quality of Life Inventory (PedsQL) 3.0 Cardiac Module. Scores were compared with the PedsQL Generic Core Scales in the same population. Predictors of Cardiac Module dimensions were determined by univariate and multivariate linear regression, with P ≤ 0.05 considered statistically significant. Results Among 425 patients who had the PedsQL 3.0 Cardiac Module, the HRQL mean (standard deviation) scale scores were as follows: Heart Problems and Treatment, 78.7 (19.0); Treatment II, 94.5 (15.2); Perceived Physical Appearance, 93.6 (13.9); Treatment Anxiety, 71.1 (29.5); Cognitive Problems, 67.3 (22.7); and Communication, 67.5 (31.2). Correlations between Cardiac Module and Generic Core Scales were as follows: Heart Problems and Treatment × Physical Functioning 0.57; Perceived Physical Appearance × Psychosocial Summary 0.21; Cognitive Problems × School Functioning 0.48; Treatment Anxiety × Physical Functioning 0.38; and Communication × School Functioning 0.30. Thirteen predictor variables were independently associated with at least 1 dimension of the Cardiac Module, and these only partially overlapped with independent predictors of Generic Core Scale summary scores. Conclusions The Cardiac Module measured a different HRQL construct than the Generic Core Scales, reflected by low correlations among scores and different independent predictors in the same population of children. Future studies should determine the relation of these scores with longer-term outcomes including school achievement, mental health, and well-being.