Background:The 24-question Early-Onset Scoliosis Questionnaire (EOSQ-24) is a proxy measure assessing health-related quality of life (HRQoL) among patients with early-onset scoliosis (EOS). There exists an increasing need to assess HRQoL through a child’s own perspective, particularly for older children and adolescents with EOS. The purpose of this study was to develop and validate a self-reported questionnaire, the Early-Onset Scoliosis Self-Report Questionnaire (EOSQ-SELF), to assess HRQoL in older children and adolescents with EOS.Methods:A literature review, an expert focus group, and patient interviews were used to generate a preliminary survey of appropriate domains and question items. This survey was provided to English-speaking patients with EOS who were 8 to 18 years of age and capable of answering survey questions. Content validity was assessed for clarity and relevance of questions. Confirmatory factors analysis was performed to reduce the number of items and determine domains that fit items. Reliability was evaluated by measuring the internal consistency of items and test-retest reliability. Construct validity was evaluated by convergent, discriminant, and known-group validity.Results:The literature review, expert focus group, and patient interviews identified 59 questions in 14 domains. Psychometric analysis reduced these to 30 questions across 12 domains: General Health, Pain/Discomfort, Pulmonary Function, Transfer, Physical Function/Daily Living, Participation, Fatigue/Energy Level, Sleep, Appearance, Relationships, Emotion, and Satisfaction. The final questionnaire was found to have good content and construct validity and adequate reliability.Conclusions:The EOSQ-SELF is a valid and reliable instrument for measuring self-reported HRQoL among older children and adolescents with EOS (ages 8 to 18 years). This will serve as an important research outcome measure and enhance clinical care by providing a better understanding of HRQoL for these patients.Level of Evidence:Diagnostic Level II. See Instructions for Authors for a complete description of levels of evidence.
Introduction: Due to a combination of poor respiratory muscle control and mechanical lung compression secondary to spine and chest wall deformities, patients with neuromuscular (NM) early-onset scoliosis (EOS) are at a high risk for pulmonary complications including pneumonia. The purpose of this study is to examine the effect of surgical intervention on the prevalence and risk of postoperative pneumonia in patients with NM EOS. Methods: In this retrospective cohort study, pediatric (18 y old and below) patients with NM EOS undergoing index fusion or growth-friendly instrumentation from 2000 to 2018 were identified. Patients were then categorized into 2 groups: those with ≥50% curve correction and those with <50% curve correction of the coronal deformity at the first postoperative visit. The primary outcome of interest was postoperative pneumonia occurring between 3 weeks and 2 years postoperatively. Manual chart review was supplemented with phone call surveys to ensure all occurrences of preoperative/postoperative pneumonia (ie, in-institution and out-of-institution visits) were accounted for. Results: A total of 35 patients (31% female, age at surgery: 10.3±4.3 y) with NM EOS met inclusion criteria. Twenty-three (66%) patients experienced at least 1 case of preoperative pneumonia. Twenty-six (74%) patients had ≥50% and 9 (26%) patients had <50% immediate postoperative curve correction. In total, 12 (34%) patients experienced at least 1 case of postoperative pneumonia (7 in-institution, 5 out-of-institution). Seven (27%) patients with ≥50% curve correction versus 5 (56%) with <50% curve correction experienced postoperative pneumonia. Relative risk regression demonstrated that patients with <50% curve correction had increased risk of postoperative pneumonia by 2.1 times compared with patients with ≥50% curve correction (95% confidence interval: 0.9; 4.9, P=0.099). Conclusion: The prevalence of preoperative and postoperative pneumonia is high in patients with NM EOS. This study presents preliminary evidence suggesting that percent curve correction is associated with the occurrence of postoperative pneumonia in patients with NM EOS undergoing surgical correction.
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