Early Onset Scoliosis Questionnaire (EOSQ-24) Scores are Worsening Over Time in Untreated Idiopathic and Congenital Patients.

Abstract

The Early Onset Scoliosis Questionnaire (EOSQ-24) is a proxy survey designed to evaluate the health-related quality of life (HRQoL) of patients with early-onset scoliosis (EOS). In recent years, a number of studies have shown that mental health among children and adolescents is worsening even in the absence of surgical interventions. Changes in HRQoL of adolescents with idiopathic scoliosis (SRS22) have been studied, but no studies exist analyzing EOS patients and their parents. We aimed to determine changes in the HRQoL of EOS patients and the burden on their parents based on the results of the EOSQ-24. A retrospective query of a multicenter database identified 1787 patients with EOS who had not yet had any intervention (observation only), whose parents completed a total of 3986 EOSQ-24s from 2012 to 2024. Diagnoses included 791 (44.3%) congenital, 522 (29.2%) idiopathic, 274 (15.3%) neuromuscular, and 200 (11.2%) syndromic cases. A mean score from 1 to 5 was calculated for each EOSQ-24 domain (general health, pain and discomfort, pulmonary function, transfer, physical function, daily living, fatigue and energy level, emotion, parental impact, financial impact, and child satisfaction) at each year. Multiple linear regression was performed to reduce the effect of confounding variables. The mean score of each EOSQ-24 domain at each year was the dependent variable, and the independent variable was the years from 2012. Coefficients with P<0.05 were considered significant. In the overall cohort, multiple linear regression revealed a significant decrease in transfer, physical function, daily living, fatigue and energy level, emotion, parental impact, and child satisfaction. General health, pain and discomfort, pulmonary function, and financial impact demonstrated no significant change. Patients with congenital and idiopathic etiologies had significant decreases in most of the same domains as the overall cohort, while neuromuscular and syndromic patients demonstrated no significant decreases in any domain. Parents of patients with EOS report that their children's HRQoL has decreased significantly in more than half of the domains in the last 12 years, suggesting that the burden on these patients and their parents has worsened over time. There is a particularly disproportionate effect in patients with congenital and idiopathic etiologies. These results indicate a significant need for improved mental health support for both EOS patient and their caregivers.