title: Outcome assessment in neuromuscular spinal deformity.
abstract: Patient-based outcome measures are important tools quantifying the disease-specific and/or global quality of life (QOL) effects of spinal deformity treatment. In patients with neuromuscular disorders such as cerebral palsy, muscular dystrophy, and myelomeningocele, treatment effects must be differentiated from underlying disease functional impairments. In general, the goals of spinal surgery in these patients are to improve QOL by enhancing sitting balance and posture, improving lung and gastrointestinal function, and reducing pain and deformity. In selected patients, improving ambulation and hand function may also be realistic surgical goals. QOL measures specific to both the neuromuscular diagnosis and spinal deformity provide higher quality information on treatment outcomes for a particular patient than standard radiographic measures. This article reviews patient-based outcome measures in spinal deformity patients with neuromuscular disorders, including their development and use in comparative outcome studies in the recent literature.
authors.affiliation: Department of Orthopaedic Surgery, Geffen School of Medicine at UCLA, Los Angeles, CA, USA. rbowen@mednet.ucla.edu
authors.forename: Richard E
authors.initials: RE
authors.lastname: Bowen
authors.forename: Mark F
authors.initials: MF
authors.lastname: Abel
authors.forename: Vincent
authors.initials: V
authors.lastname: Arlet
authors.forename: Desmond
authors.initials: D
authors.lastname: Brown
authors.forename: Douglas C
authors.initials: DC
authors.lastname: Burton
authors.forename: Phyllis
authors.initials: P
authors.lastname: D'Ambra
authors.forename: Laura
authors.initials: L
authors.lastname: Gill
authors.forename: Dale V
authors.initials: DV
authors.lastname: Hoekstra
authors.forename: Lawrence I
authors.initials: LI
authors.lastname: Karlin
authors.forename: James
authors.initials: J
authors.lastname: Raso
authors.forename: James O
authors.initials: JO
authors.lastname: Sanders
authors.forename: Frank J
authors.initials: FJ
authors.lastname: Schwab
mesh_terms: D006801:Humans; D009468:Neuromuscular Diseases / Q000150:complications* / Q000503:physiopathology; D017063:Outcome Assessment, Health Care / Q000379:methods*; D010146:Pain / Q000209:etiology; D004856:Postural Balance; D011788:Quality of Life; D012600:Scoliosis / Q000209:etiology / Q000503:physiopathology / Q000601:surgery*; D016896:Treatment Outcome