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Title: The Final 24-Item Early Onset Scoliosis Questionnaires (EOSQ-24): Validity, Reliability and Responsiveness

Authors: Matsumoto H, Williams B, Park HY, Yoshimachi JY, Roye BD, Roye DP Jr, Akbarnia BA, Emans J, Skaggs D, Smith JT, Vitale MG.

Journal: J PediatrOrthop.Jun 13epub

Date: January 01, 2016

Excerpt: The goals of EOS treatment are multifaceted. While scoliotic curve control and chest growth and development are primary, improvement in health-related quality of life (HRQoL) is implicit. This study reports on the development and validation of a patient reported outcome instrument that measures caregiver evaluation of quality of life in EOS patients and caregiver burden.

Keywords: Early-onset scoliosis; Quality of life; Surgery

Summary:

What is the purpose of this study?

The aim of this study was to develop and validate the 24-item Early Onset Scoliosis Questionnaire (EOSQ-24), and examine the validity, reliability, and responsiveness of the instrument.

 

RESULTS

  • The EOSQ-24 was given to 95 caregivers of EOS patients aged 0-18. 141 caregivers of healthy patients without spinal deformity also completed the EOSQ-24 to establish normative data.
  • Criterion validity was investigated by measuring agreement between its scores and pulmonary function testing (PFT). The EOSQ-24 domain scores of General Health, Pain/Discomfort, Pulmonary Function, Physical Function, Daily Living, Fatigue/Energy Level, and Emotion were positively correlated with PFTs (% predicted values of FVC and FEV1).
  • To assess domain differences, patients were separated by etiology (Idiopathic, Congenital, Syndromic, Neuromuscular) Neuromuscular patientshad a significantly worsened General Health, Transfer,Physical Function, Daily Living, and Fatigue/EnergyLevel compared with idiopathic and congenital/structuralpatients. Neuromuscular patients also had a significantlyincreased Parental Burden compared with the other etiologygroups. Syndromic patients had a significantly decreasedGeneral Health and Daily Living compared withidiopathic and congenital/structural patients. Althoughthe sample size for Child and Parent Satisfaction scoreswas small, neuromuscular patients had the highest satisfactionscores after the treatments. Idiopathic patientshad the worst satisfaction scores among all etiologygroups.
  • Reliability, content validity, and responsiveness were also evaluated. Items were rated as clear by caregivers and health care providers. When participants were given the EOSQ-24 within a few weeks apart, agreement between scores was very good in all domains. In addition, the EOSQ-24 showed significant differences between pre and post-operative results.

Important Discussion Points

  • The results of this study demonstrate that multiple domains in the EOSQ-24 respond to changes in HRQoLafter growing instrumentation surgery.
  • While not the goal of the study, results showed that neuromuscular patients improved their HRQoL after the surgery while patientswith idiopathic etiology worsened their HRQoLpostoperatively. This suggests that the procedures on patients whoare relatively healthy and have high HRQoL preoperatively, such as patients withan idiopathic etiology, are to prevent future progressionof the spinal curvature and deterioration of theirpulmonary function; however surgical injury may result in posteroperative decrease in HRQoL.
  • This study only evaluated patients treated surgically for EOS; additional study is needed to evaluate the effect of other treatments such as casting and bracing.