Patients With Myopathy and Scoliosis Treated Conservatively: Retrospective Long-Term Follow-Up and Prospective Outcomes.

Study DesignAmbispective study.ObjectivesTo determine the long-term natural history of non-surgically treated patients with myopathy and spinal deformity.MethodsData were analyzed from 118 files from a children's rehabilitation hospital. Seventeen patients were operated on; the remaining 101 patients (86%) were managed conservatively. Retrospective data included demographics, medical history, respiratory and mobility status, Cobb angle (CA), and pelvic obliquity (PO). Prospective data were obtained via telephone interviews and included the Scoliosis Research Society (SRS-22r), World Health Organization Quality of Life (QoL) (WHO-QoL) and Functional Independence Measure for Children (WeeFIM).ResultsOne hundred and one patients with myopathy and scoliosis did not have surgery and were followed for up to 33 years. Their mean age at first visit was 5.45 ± 5.27 years. CA and PO at the first visit were 27.05 ± 27.07 and 7.74 ± 9.81°, worsening to 46.95 ± 39.26 and 15.61 ± 8.57° at last visit. Respiratory data for 67 patients showed 45 who remained stable and 14 who worsened moderately and 5 severely. Mobility status worsened but not significantly. Of the 24 participants who responded to the survey (mean age 17.41 ± 10.84 years), 92% are single or divorced. They reported being generally satisfied with their QoL, although their functional scores indicated limited independence.ConclusionsDespite worsening of scoliosis and limited independence, participants were generally satisfied with their QoL.