Study design: A prospective study of 100 consecutive preoperative patients with neuromuscular scoliosis whose activities and function were evaluated in a long-term follow-up.
Objectives: To evaluate long-term follow-up of functioning in patients with neuromuscular scoliosis.
Summary of background data: Few studies of patients operated for neuromuscular scoliosis are prospective, with long-term follow-up based on assessments of activities and function.
Methods: The follow-up included 82 patients with neuromuscular scoliosis who were evaluated before surgery from 1992 to 1996. The follow-up time was 84.5 months on average. The assessments comprised sitting, angle of scoliosis, lung function, reaching, pain estimation, activities of daily living (ADL), care given, and time used for resting. A follow-up questionnaire as well two open-ended questions about the positive and negative effects of the surgery were sent to the patients/parents.
Results: Improvements after surgery were shown in the Cobb angle, lung function, seating position, ADL, and time used for resting. In a comparison between the 1-year follow-up and the long-term follow-up, there were further improvements in sitting, ADL, and care given but an increased Cobb angle. These results were in line with the assessments reported by patients and relatives. Only minor differences were shown in long-term outcome in subgroups according to understand/not understand verbal instructions. Patient age 21 years or less seemed more improved than those age 22 years and older at the time of surgery.
Conclusions: The comparison of the preoperative and long-term follow-ups showed that patients were mostly improved. Further improvements were shown beyond the 1-year follow-up. The subjective assessments also confirmed the results. The heterogeneity of patients with neuromuscular scoliosis makes it important to evaluate the patients in subgroups and in relation to age.