With health care becoming more value-based, and to facilitate global benchmarking, it is critical to identify and standardize disease-specific, patient-reported outcome measures (PROMs). Core outcome sets represent the baseline for valid disease-specific PROMs, the minimum that should be measured and reported in all outcome registries of a specific condition. This helps clinicians evaluate their patient populations to ensure that the outcomes of their patients are consistent with studies and other groups and that their patients are getting optimal care.

 

Principal Investigator Marinus de Kleuver states that COS can have a huge impact on many levels especially for spinal deformities where both adolescent and adult spinal deformities can cause severe disability and reduce quality of life, resulting in a substantial societal burden.

 

The AO Spine-sponsored study, Identification of a Core Outcome Set for Spinal Deformity Surgery (COSSCO), set out to develop core outcome sets for adolescents and young adults with a spinal deformity.

 

In identifying strengths and weaknesses of current PROMs, the study recognized a gap regarding neurological and pulmonary functions for adult spinal deformity patients, while outcomes related to mobility and pain were well represented.

 

As lead author for defining a COS for adolescent and young adult patients with a spinal deformity, de Kleuver summarizes consensus was reached on the inclusion of 13 core outcome domains: satisfaction with overall outcome of surgery, satisfaction with cosmetic result of surgery, pain interference, physical functioning, health-related quality of life, recreation and leisure, pulmonary fatigue, change in deformity, self-image, pain intensity, physical function, complications, and reoperation. There was agreement that the SRS-22r, EQ-5D, and a pulmonary fatigue questionnaire yet to be developed are the most appropriate set of patient-reported measurement instruments to cover these domains.

 

The next step is defining an adult spinal deformity COS; this is currently being finalized and has proven to be more challenging due to the wider variability of underlying diagnoses and the large variability of outcome measures that already existed.

 

The systematic review results of the adult COSSCO now serve as the foundation for seeking international consensus on a standard set of outcome domains, accompanied PROMs, and contributing factors to be used in future clinical trials and spine registries.