Importance of patient-reported individualized goals when assessing outcomes for adult spinal deformity (ASD): initial experience with a Patient Generated Index (PGI) |
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Authors: | Justin K Scheer Malla Keefe Virginie Lafage Michael P Kelly Shay Bess Douglas C Burton Robert A Hart Amit Jain Baron S Lonner Themistocles S Protopsaltis Richard Hostin Christopher I Shaffrey Justin S Smith Frank Schwab Christopher P Ames |
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Institution: | 1. School of Medicine, University of California, San Diego, 9500 Gilman Dr., La Jolla, CA 92093, USA;2. Department of Neurological Surgery, University of California, San Francisco, 505 Parnassus Ave, M779, San Francisco, CA 94143, USA;3. Department of Orthopaedic Surgery, Hospital for Special Surgery, 535 E 70th Street, New York, NY 10021, USA;4. Department of Orthopedic Surgery, Washington University, 660 S Euclid Avenue, Campus Box 8233, St. Louis, MO 63110, USA;5. Department of Orthopaedic Surgery, NYU Hospital for Joint Diseases, 306 E 15th Street, Suite 4F, New York, NY 10003, USA;6. Department of Orthopaedic Surgery, University of Kansas Medical Center, 3901 Rainbow Blvd, Kansas City, KS 66160, USA;7. Department of Orthopaedic Surgery, Oregon Health & Science University, 3181 SW Sam Jackson Park Rd., Portland, OR 97239, USA;8. Department of Orthopaedic Surgery, Johns Hopkins Hospital, 610 North Caroline Street, Suite 5243, Baltimore, MD 21287, USA;9. Department of Orthopaedic Surgery, Mount Sinai Medical Center Beth Israel Hospital, 10 Nathan D Perlman Pl, New York, NY 10003, USA;10. Department of Orthopaedic Surgery, Baylor Scoliosis Center, 4708 Alliance Blvd, Suite 810, Plano, TX 75093, USA;11. Department of Neurosurgery, University of Virginia Health System, PO Box 800212, Charlottesville, VA 22908, USA |
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Abstract: | Background ContextCurrent 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.PurposeThis study aimed to describe the initial experience of a Patient Generated Index (PGI) in which patients create their own outcome domains.Study DesignThis is a single-center prospective study.Patient SamplePatients with adult spinal deformity (ASD) comprise the study sample.Outcome MeasuresOswestry 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.MethodsOswestry 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.ResultsA 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.ConclusionsThe 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. |
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Keywords: | Adult spinal deformity Health-related quality of life Patient Generated Index Pedicle subtraction osteotomy Sagittal malalignment Vertebral column resection |
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