Priority 2 from the Scoliosis PSP

UNCERTAINTY: How is quality of life affected by scoliosis and its treatment? How can we measure this in ways that are meaningful to patients? (JLA PSP Priority 2)
Overall ranking	2
JLA question ID	0059/2
Explanatory note	Not available for this PSP
Evidence	Previous related research studies - Stefano Negrini, Silvia Minozzi, Josette Bettany-Saltikov, Nachiappan Chockalingam, Theodoros B. Grivas, Tomasz Kotwicki, Toru Maruyama, Michele Romano & Fabio Zaina (2015) Braces for idiopathic scoliosis in adolescents. Cochrane Back and Neck Group, The Cochrane Library. Theis J, Gerdhem P, Abbott A. Quality of life outcomes in surgically treated adult scoliosis patients: a systematic review. European Spine Journal 2014: epub Rushton PR, Grevitt MP. What is the effect of surgery on the quality of life of the adolescent with adolescent idiopathic scoliosis? A review and statistical analysis of the literature. Spine 2013; 38(9): 786-794
Health Research Classification System category	Musculoskeletal

Extra information provided by this PSP
Original uncertainty examples	What functional gains or quality of life can be measured in surgery for neuromuscular scoliosis? ~ What are the success stories for those who have lived healthy and low pain or pain free lives with scoliosis and/or spinal fusion? Where are the real models to look up to? ~ Do the orthopaedic led outcome measures following spinal surgery in children with neuromuscular weakness, match those identified by the patient? e.g. does orthopaedic intervention for spinal scoliosis, really have a positive impact on the quality of life for children with NMW and scoliosis? ~ How closely do the outcomes that are considered most important to young people with adolescent idiopathic scoliosis match up with the healthcare professional's most important outcomes for proposed interventions? Are there any tools/methods to improve communication between these parties that have evidence of benefit?

Extra information provided by this PSP

Original uncertainty examples

What functional gains or quality of life can be measured in surgery for neuromuscular scoliosis? ~ What are the success stories for those who have lived healthy and low pain or pain free lives with scoliosis and/or spinal fusion? Where are the real models to look up to? ~ Do the orthopaedic led outcome measures following spinal surgery in children with neuromuscular weakness, match those identified by the patient? e.g. does orthopaedic intervention for spinal scoliosis, really have a positive impact on the quality of life for children with NMW and scoliosis? ~ How closely do the outcomes that are considered most important to young people with adolescent idiopathic scoliosis match up with the healthcare professional's most important outcomes for proposed interventions? Are there any tools/methods to improve communication between these parties that have evidence of benefit?

PSP information
PSP unique ID	0059
PSP name	Scoliosis
Total number of uncertainties identified by this PSP.	54 (To see a full list of all uncertainties identified, please see the PSP final report held on the JLA website)
Date of priority setting workshop	4 November 2017