title: Measuring quality of life in children with early onset scoliosis: development and initial validation of the early onset scoliosis questionnaire.
abstract: BACKGROUND
  Treatment of children with early onset scoliosis (EOS) seeks to improve natural history and health related quality of life (QOL). QOL measurement presents a significant challenge given the young age, comorbidities, and heterogeneity of this population. The purpose of this study is to develop a disease specific measure reflecting issues of importance to EOS patients and caretakers that is responsive to clinical and treatment changes.
  
  
  METHODS
  Review of the literature and relevant measures informed development of semistructured qualitative interviews. Interviews of caregivers of EOS patients were interpreted through the framework technique. A masterlist of 75 items was created and responses were scaled on a 5-point Likert scale. Psychometric analysis was carried out to group items into domains, to maintain score distribution, to create a responsive instrument, and to identify question redundancy.
  
  
  RESULTS
  Content validation showed 8 items with low content validity indices (<0.70). Item distribution analysis showed 19 items with skewed distribution. Item reliability showed redundant items within domains (r≥0.5). Construct validity showed unique domains measuring intended issues of interest. The resulting Early Onset Scoliosis Questionnaire (EOSQ) includes 33 items in 13 domains: General Health, Pain, Physical Function, Pulmonary Function, Daily Living, Fatigue, Emotion, Surgical Concerns, Satisfaction, Transfer, Financial Burden, Parental Burden, and Treatment Outcomes.
  
  
  CONCLUSIONS
  The EOSQ reflects QOL and caregiver burden in the EOS population. The EOSQ will expand options for outcome assessment in this unique population.
authors.affiliation: Division of Pediatric Orthopaedic Surgery, Department of Orthopaedic Surgery, Columbia University , Columbia University Medical Center, New York, NY, USA.
authors.forename: Jacqueline
authors.initials: J
authors.lastname: Corona
authors.forename: Hiroko
authors.initials: H
authors.lastname: Matsumoto
authors.forename: David P
authors.initials: DP
authors.lastname: Roye
authors.forename: Michael G
authors.initials: MG
authors.lastname: Vitale
mesh_terms: D017668:Age of Onset; D017028:Caregivers / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D005260:Female; D006801:Humans; D007223:Infant; D008297:Male; D010865:Pilot Projects; D011594:Psychometrics; D011788:Quality of Life; D012600:Scoliosis / Q000503:physiopathology*; D011795:Surveys and Questionnaires; D016896:Treatment Outcome