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Long-term follow-up of functioning after spinal surgery in patients with Rett syndrome
Linköping University, Department of Social and Welfare Studies, Division of Health, Activity and Care. Linköping University, Faculty of Health Sciences.
Linköping University, Department of Clinical and Experimental Medicine, Orthopaedics and Sports Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Orthopaedic Centre, Department of Orthopaedics Linköping.
Linköping University, Department of Clinical and Experimental Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Orthopaedic Centre, Department of Orthopaedics Linköping. (Landstinget i Östergötland)
Linköping University, Department of Clinical and Experimental Medicine, Orthopaedics and Sports Medicine. Linköping University, Faculty of Health Sciences. Östergötlands Läns Landsting, Orthopaedic Centre, Department of Orthopaedics Linköping.
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2009 (English)In: European spine journal(European spine journal(ISSN 0940-6719)(EISSN 1432-0932), ISSN 0940-6719, Vol. 18, no 4, 506-511 p.Article in journal (Refereed) Published
Abstract [en]

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.

Place, publisher, year, edition, pages
Springer , 2009. Vol. 18, no 4, 506-511 p.
Keyword [en]
Rett syndrome, Neuromuscular scoliosis, Long-term follow-up, Functioning
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Medical and Health Sciences
Identifiers
URN: urn:nbn:se:liu:diva-17897DOI: 10.1007/s00586-008-0876-6OAI: oai:DiVA.org:liu-17897DiVA: diva2:212985
Note

The original publication is available at www.springerlink.com: Eva-Lena Larsson, Stig Aaro, Peter Ahlinder, Helena Normelli, Hans Tropp and Birgitta Öberg, Long-term follow-up of functioning after spinal surgery in patients with Rett syndrome, 2009, EUROPEAN SPINE JOURNAL, (18), 4, 506-511. http://dx.doi.org/10.1007/s00586-008-0876-6 Copyright: Springer Science Business Media http://www.springerlink.com/

Available from: 2009-04-26 Created: 2009-04-24 Last updated: 2016-04-29

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Larsson, Eva-LenaAaro, StigNormelli, HelenaTropp, HansÖberg, Birgitta

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