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

Author information

1
Pediatric Orthopaedic Surgery, Department of Orthopaedic Surgery, Columbia University, College of Physicians and Surgeons, New York, NY, USA.

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.

PMID:
20543419
[Indexed for MEDLINE]

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