IS THERE A DIFFERENT PERCEPTION OF THE SURGICAL OUTCOME TO ADDRESS SCOLIOTIC DEFORMITIES IN PEDIATRIC PATIENTS WITH SPASTICITY BETWEEN PARENTS AND PROFESSIONAL CAREGIVERS?

Abstract

Objective: The aim of this study was to delineate parents’ and professional caretakers’ satisfaction after spinal fusion in children with spasticity, and to determine differences in their perceptions.

Study Design-Methods: A questionnaire assessing patients’ functional improvement after spinal arthrodesis for correcting scoliosis was addressed to 190 parents. An expanded questionnaire was also addressed to 122 educators and therapists working exclusively in the care of children with cerebral palsy.

Results: The vast majority of parents and caregivers reported a very positive impact of the surgery on patients’ overall function, quality of life, and ease of care. Caretakers did not recognize effects of the scoliotic deformity on patients’ head control, hand use, and feeding ability. Parents had more appreciation of the benefits in the children’s appearance, while educators and therapists acknowledged more improvement in gross and oral motor function. Most parents (95.8%) and caretakers (84.3%) would recommend spinal surgery, considering that the benefits from scoliosis correction clearly outweigh the increased risk of surgical complications in this group of severely involved patients.

Conclusions: Correction of spinal deformity in children with cerebral palsy is associated with a very high parents’ and caretakers’ satisfaction rate, with both groups reporting excellent improvement in appearance, comfort, ease of care, and some functional gains. The answers received during the survey demonstrated clearly that the vast majority of parents and caretakers consider the surgical outcome of the spinal fusion very beneficial for the patients’ overall function and level of care. There were documented differences in the perceived positive impact of spine surgery in children with cerebral palsy between the two groups. Parents stated more consistent benefits from correcting scoliosis in the patients’ appearance, whereas therapists and educators delineated the improvement in the gross and oral motor function. However, both groups considered that the benefits from correcting scoliotic deformity undoubtedly offset the potential risks from surgery, and would have no hesitation in recommending this procedure for children with cerebral palsy who develop significant scoliosis interfering with their level of function and their overall quality of life.