Development and initial validation of a disease specific outcome measure for early onset scoliosis

Stud Health Technol Inform. 2010;158:172-6.

Abstract

Introduction: 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.

Objective: To develop a disease specific measure reflecting issues of importance to EOS patients and caretakers.

Materials and methods: Review of the literature and relevant measures informed development of semi-structured qualitative interviews. Interviews of caregivers of EOS patients were interpreted through the framework technique. A master-list of 75-items was created and responses were scaled on a 5-point Likert-scale. Psychometric analysis was performed to group items into domains, to maintain score distribution, to create a responsive instrument, and to identify question redundancy.

Results: Content validation revealed 8-items with low content validity indices. Item distribution analysis demonstrated 19-items with skewed distribution. Item reliability demonstrated redundant items within domains (r> or =0.5). Construct validity demonstrated 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.

Conclusion: The EOSQ reflects QOL and caregiver burden in the EOS population. The EOSQ will expand options for outcome assessment in this unique population.

Publication types

  • Validation Study

MeSH terms

  • Age of Onset*
  • Child, Preschool
  • Humans
  • Interviews as Topic
  • Scoliosis / diagnosis*
  • Surveys and Questionnaires / standards*