Importance of patient reported individualized goals when assessing outcomes for adult spinal deformity (asd): initial experience with a patient generated index (PGI)

Abstract Background Context Current metrics to assess a patient's health-related quality-of-life (HRQOL) may not reflect a true change in a patient's specific perception of what is most important to them. Purpose To describe the initial experience of a Patient Generated Index (PGI) in which patients create their own outcome domains. Study Design Single center prospective study Patient Sample Adult spinal deformity (ASD) patients Outcome Measures Oswestry Disability Index (ODI), Short-Form 36 (SF36:PCS/MCS), Scoliosis research society 22r (SRS22r), and PGI Methods ODI, SF36, SRS22r, and PGI were administered preoperatively and postoperatively at 6wks, 3mo, 6mo, and 1 and 2yrs. PGI correlations with ODI, SF36, SRS Total score, free text frequency analysis of PGI exact response with text in ODI/SRS22r questionnaires, and the responsiveness (effect size; ES) of the HRQOL metrics were analyzed. No funding was used for this study and there are no conflicts of interest. Results 59 patients with 209 clinical encounters produced 370 PGI written response topics that included affect/emotions, relationships, activities of daily life, personal care, work, and hobbies. Mean preoperative PGI score was 18.6±13.5 (0-71.7 out of 100[best]) and mean scores significantly improved at every postoperative time point (p