Importance of patient-reported individualized goals when assessing outcomes for adult spinal deformity (ASD): initial experience with a Patient Generated Index (PGI).

Background Context: Current metrics to assess patients' health-related quality of life (HRQOL) may not reflect a true change in the patients' specific perception of what is most important to them.

Purpose: This study aimed to describe the initial experience of a Patient Generated Index (PGI) in which patients create their own outcome domains.

Study Design: This is a single-center prospective study.

Patient Sample: Patients with adult spinal deformity (ASD) comprise the study sample.

Outcome Measures: Oswestry Disability Index (ODI), Short Form-36 (SF-36 Physical Component Score [PCS] and Mental Component Score [MCS]), Scoliosis Research Society-22r (SRS-22r), and PGI.

Methods: Oswestry Disability Index, SF-36, SRS-22r, and PGI were administered preoperatively and postoperatively at 6 weeks, 3 months, 6 months, and 1 and 2 years. PGI correlations with ODI, SF-36, SRS total score, free-text frequency analysis of PGI exact response with text in ODI and SRS-22r 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: A total of 59 patients with 209 clinical encounters produced 370 PGI written response topics that included affect or 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<.05). Preoperative PGI scores significantly correlated with preoperative ODI (r=-0.28, p=.03), MCS (r=0.48, p<.01), and SRS total (r=0.57, p<.01). Postoperative PGI scores correlated with all HRQOL measures (p<.0001): ODI (r=-0.65), PCS (r=0.50), MCS (r=0.55), and SRS total (r=0.63). PGI responses exactly matched ODI and SRS-22r text at 47.8% and 35.4%, respectively, and at 63.2% and 58.9%, respectively, for categories. Patient Generated Index ES at a minimum of 1-year follow-up was -2.39, indicating substantial responsiveness (|ES|>0.8). Effect sizes for ODI, SRS-22r total, SF-36 PCS, and SF-36 MCS were 2.16, -2.06, -2.05, and -0.80, respectively.

Conclusions: The PGI is easy to administer and offers additional information about the patients' perspective not captured in standard HRQOL metrics. Patient Generated Index scores correlated with all of the standard HRQOL scores and were more responsive than ODI, SF-36, and SRS-22r, suggesting that the PGI may be a step closer to one HRQOL measure that better encompasses concerns and goals of the individual patients.