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.
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 EOSpatients and caretakers. MATERIALS AND METHODS: Review of the literature and relevant measures informed development of semi-structured qualitative interviews. Interviews of caregivers of EOSpatients 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.
Authors: Behrooz A Akbarnia; Robert M Campbell; Alain Dimeglio; Jack M Flynn; Gregory J Redding; Paul D Sponseller; Michael G Vitale; Muharrem Yazici Journal: J Child Orthop Date: 2011-04-27 Impact factor: 1.548
Authors: Hiroko Matsumoto; Brendan Williams; Howard Y Park; Julie Y Yoshimachi; Benjamin D Roye; David P Roye; Behrooz A Akbarnia; John Emans; David Skaggs; John T Smith; Michael G Vitale Journal: J Pediatr Orthop Date: 2018-03 Impact factor: 2.324