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Activity, participation and quality of life changes following scollosis correction for children with rare and challenging spinal deformity: severe (non-ambulatory) cerebral palsy, Angelman syndrome and idiopathic early onset scollosis

Sewell, MD; (2017) Activity, participation and quality of life changes following scollosis correction for children with rare and challenging spinal deformity: severe (non-ambulatory) cerebral palsy, Angelman syndrome and idiopathic early onset scollosis. Doctoral thesis , UCL (University College London).

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Abstract

INTRODUCTION: Spinal fusion is used to treat scoliosis in children with skeletally mature spines and neuromuscular conditions such as cerebral palsy and Angelman syndrome. Growth rods are used to treat scoliosis in the growing spine for children with early onset scoliosis (EOS). Following such intervention, the World Health Organisation considers quality of life (QoL) and activity and participation outcomes should be measured to evaluate the impact of the treatment on the child. This thesis hypothesizes that spinal fusion for scoliosis in children with severe (non-ambulatory) cerebral palsy or Angelman syndrome can improve QoL, activity and participation, however, growth rod surgery for idiopathic EOS, when the spine is still growing, reduces activity and participation. PATIENTS AND METHODS: Children with a significant scoliosis who underwent spinal fusion or growth rod surgery were compared with a group that were managed non-operatively by just observing them for the treatment period. Questionnaire and radiographic data were recorded over a 1-2 year period. RESULTS: 1) In children with scoliosis and severe cerebral palsy, spinal fusion was associated with an increase in carer-assessed QoL at 2 years, whereas non-operative treatment was associated with a decrease. Change in pain was the most significant factor affecting QoL changes. 2) In children with scoliosis and severe cerebral palsy, spinal fusion was associated with an increase in activity and participation, whereas non-operative treatment was associated with a decrease. 3) In children with scoliosis and Angelman syndrome, spinal fusion was associated with an increase in activity and participation, reduction in pain and a decrease in frequency of severe chest infections. Non-operative treatment resulted in progression of scoliosis during childhood and decrease in activity. 4) In children with idiopathic EOS, growth rod surgery was associated with a reduction in activity and participation, and improvement in spinal deformity. Observational treatment was associated with a worsening of spinal deformity and no change in activity and participation. CONCLUSION: In children with rare and challenging spinal deformities, spinal fusion for children with severe cerebral palsy or Angelman syndrome and skeletally mature spines was associated with an improvement in QoL and/or activity and participation. In contrast growth rod surgery for idiopathic EOS, where the spine is still growing, was associated with a reduction in activity and participation.

Type: Thesis (Doctoral)
Title: Activity, participation and quality of life changes following scollosis correction for children with rare and challenging spinal deformity: severe (non-ambulatory) cerebral palsy, Angelman syndrome and idiopathic early onset scollosis
Event: UCL (University College London)
Language: English
UCL classification: UCL > Provost and Vice Provost Offices
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences
UCL > Provost and Vice Provost Offices > School of Life and Medical Sciences > Faculty of Medical Sciences > Div of Surgery and Interventional Sci
URI: https://discovery.ucl.ac.uk/id/eprint/1539038
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