Long-Term Follow-up of Functioning After Spinal Surgery in Patients With Neuromuscular Scoliosis

Larsson, Eva-Lena C; Aaro, Stig; Normelli, Helena; Öberg, Birgitta

doi:10.1097/01.brs.0000180403.11757.6a

Cited by 53 publications

(30 citation statements)

References 21 publications

(20 reference statements)

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“…The results from the present study correspond with the long-term follow-up of functioning after spinal surgery in patients with neuromuscular scoliosis [7]. The parents' views confirmed the other measurements, except for general health and quality of life, which could be of interest in a future study.…”

Section: Discussionsupporting

confidence: 68%

“…The parents' views confirmed the other measurements, except for general health and quality of life, which could be of interest in a future study. There were no differences between the 1-year follow-up results and the long-term follow-up results, which are the same as in the patients who did not understand verbal instructions in the long-term follow-up of patients with neuromuscular scoliosis [7].…”

Section: Discussionsupporting

confidence: 62%

“…and ''What do you think is worse since the surgery?'' [7] ( Table 2). The responses to these two questions were analyzed, grouped together, classified into different dimensions, and illustrated by quotations.…”

Section: Prevent Progressionmentioning

confidence: 99%

“…We could not use the ADL, pain estimation, and reaching variables, or the lung function test because the patients with Rett syndrome could not understand or follow verbal instructions [5][6][7]. Along with the invitation to take part in the long-term follow-up, two-open-ended questions were mailed to the parents: ''What do you think has improved since the surgery?''…”

Section: Prevent Progressionmentioning

confidence: 99%

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Long-term follow-up of functioning after spinal surgery in patients with Rett syndrome

et al. 2009

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In a prospective study, 23 consecutive girls with Rett syndrome and neuromuscular scoliosis were evaluated for functioning at a long-term follow-up. The patients had mostly improved, which was confirmed by their parents. Rett syndrome is associated with neuromuscular scoliosis and has a typically long C-shaped thoracolumbar kyphoscoliosis. Prospective long-term follow-up studies related to these patients' total situation are sparse. Most studies focus on the Cobb angle of the scoliosis, whereas parents are mainly concerned about the girls' continued functioning. Twenty-three patients with Rett syndrome and neuromuscular scoliosis were evaluated preoperatively from 1993 to 2002. At follow-up, 19 patients remained in the study. Three patients died (not due to surgery), and one patient could not participate because it was too far to travel. Mean follow-up time was 74 months (range 49-99 months). The assessments comprised the sitting balance, seating supports in wheelchair, weight distribution, time used for rest, care given, and angle of scoliosis. Follow-up questionnaires and two-open-ended questions about the positive and negative effects of surgery were sent to parents. Sitting balance, number of seating supports in wheelchair, weight distribution, time used for rest, and the Cobb angle had all improved after surgery. The parents assessed improvement in seating position, daily activities, time used for rest, and cosmetic appearance. We can conclude that the stabilized spine resulted in sufficient strength to keep the body upright with the possibility of looking around at the surroundings more easily. The girls got better seating position with less need for seating adaptations in the wheelchair and with reduced time needed for resting during the day. Finally we can conclude that the indication for surgery is to get a better posture which lead to less risk of pressure sores, and that un upright position lead to better possibility to easily breath with fewer episodes of pneumonia and a better general health as result. The evidence of positive surgical effects for girls with Rett syndrome is of great importance in indication for surgery in the decision-making process.

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Section: Discussionsupporting

confidence: 68%

Section: Discussionsupporting

confidence: 62%

Section: Prevent Progressionmentioning

confidence: 99%

Section: Prevent Progressionmentioning

confidence: 99%

See 2 more Smart Citations

Long-term follow-up of functioning after spinal surgery in patients with Rett syndrome

et al. 2009

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“…To date, however, there are no validity data available for this instrument. Several authors have evaluated the outcome of surgery in the paediatric population with neuromuscular scoliosis using non-validated questionnaires [60][61][62] or generic paediatric outcome measurement instruments [63,64]. It would be of benefit for future work if the related scientific societies would agree to define the most appropriate instruments for evaluating non-idiopathic scoliosis.…”

Section: Outcomes In Non-idiopathic Scoliosismentioning

confidence: 99%