Determination of Normative Values for the Early Onset Scoliosis Self-Reported Questionnaire (EOSQ-SELF)

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BACKGROUND: The early-onset scoliosis (EOS) self-questionnaire (EOSQ-SELF) is a recently validated patient-reported outcome (PRO) instrument created to allow patients with EOS to report their perspectives on their own health (Appendix 1, Supplemental Digital Content 1, http://links.lww.com/BPO/A936). The goal of this study is to establish age-matched normative values for the EOSQ-SELF. METHODS: Patients aged 8 to 18 presenting to an orthopaedic surgery clinic without spinal deformities were enrolled prospectively over 2 years. Those with prior orthopaedic treatment unrelated to scoliosis and patients for second opinion or first consultation regarding scoliosis but with negative scoliosis on imaging were included. Consent was obtained before completing the questionnaire. Participants completed one questionnaire and were grouped by age (8 to 9, 10 to 11, 12 to 13, 14 to 15, and 16 to 18). IBM SPSS Statistics, Version 29, was used for analysis, reporting means and 95% confidence intervals (CIs) for each age group's normative values across all domains. RESULTS: A total of 119 patients completed the questionnaire. Fifty-six patients (47.1%) were female at birth. The age distribution was 31 (26.1%) in the 8- to 9-year-old group, 21 (17.6%) in the 10- to 11-year-old group, 26 (21.8%) in the 12- to 13-year-old group, 20 (16.8%) in the 14- to 15-year-old group, and 21 (17.6%) in the 16- to 18-year-old group. The 3 most common presentations were: (1) fracture with 48 (40.3%) patients, (2) scoliosis evaluation with unremarkable spinal imaging with 19 (16.0%) patients, and (3) pes planus with 14 (11.8%) patients. When stratified by age group, the total EOSQ-SELF was 79.6 (95% CI: 76.4-82.8) in the 8- to 9-year-old group, 77.7 (95% CI: 73.0-82.4) in the 10- to 11-year-old group, 74.8 (95% CI: 70.1-79.5) in the 12- to 13-year-old group, 78.9 (95% CI: 74.9-82.9) in the 14- to 15-year-old group, 75.0 (95% CI: 70.2-79.9) in the 16- to 18-year-old group. CONCLUSION: EOSQ-SELF is still a relatively new PRO instrument, and its utility is still being investigated. Reporting normative values for different age groups is an important step in establishing this utility. This study will help facilitate future studies looking at EOSQ-SELF scores in patients with scoliosis by providing a comparative cohort in patients without scoliosis. LEVEL OF EVIDENCE: Prospective level II.

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