Using the Patient Generated Index in Spine Surgery in an Appalachian Population
Authors: Marsh, MD, PhD Robert , L. Sedney, MD, MA Cara , Deskeseredy, RN, MScN Patricia 
Published: March 2022

In most health care fields, outcomes are becoming increasingly scrutinized and may play a role in “pay for performance;” therefore, selecting the most appropriate outcomes measures for the populations being studied or treated has evolved into a key aspect of outcomes monitoring. One way to assess patient goals is to administer a patient generated index (PGI). The philosophical underpinning of the PGI is that the person living the life is the best judge of the quality of that life. The PGI has been utilized in low back pain, as well as in adult spinal deformity surgery, however, it has not been previously utilized in an Appalachian population. The PGI was administered by means of self-report to 80 new patients with back pain who presented for assessment in the neurosurgery clinic. Participants completed an acceptability survey and provided written comments. Compliance was analyzed. Findings indicate that the PGI in its earliest form did not meet acceptable levels for use in this Appalachian sub-specialist clinic setting. This study contributes to the growing body of knowledge on patient-reported outcomes, and more specifically, the importance of utilizing patient-generated responses to map improvements in quality of life for patients over time. Introduction The World Health Organization defines quality of life (QOL) as “an individual's perception of their position in life in the context of the culture and value systems in which they live and in relation to their goals, expectations, standards and concerns. 1" Knowledge of a patient’s goals and expectations for care is important in any medical interaction but especially if the patient’s medical condition negatively impacts their QOL. One way to assess patient goals is to administer a patient generated index (PGI)2 . The philosophical underpinning of the PGI is that the person living the life is the best judge of the quality of that life. This measure has been previously validated in a number of clinical settings3 . A patient-generated measurement tool of quality of life may be particularly important in spine surgery, where patient treatment goals may not always align with surgeon goals of care. The PGI is completed in three stages: Stage 1: Patients are asked to list the five most important areas of their lives affected by their medical conditions. Stage 2: The patient rates how much each of the five areas has been affected by his or her health condition using a scale of 1-100 where 0 is the worst imaginable and 100 is “exactly as you would like it to be.” Stage 3: Patients are asked to “spend” 60 tokens on the area they would like to see the most improvement. The 60 tokens are allocated according to the patient’s priorities. A global index can be calculated by calculating the rating on stage 2 by the proportion of tokens allocated in stage 3, which are then summed to produce an index between 0 and 100. A higher score indicates a higher quality of life. The index indicates how the patient’s reality falls short of the goals and expectations for areas of their life they deem most important.2 Patient-reported outcome measures are increasingly popular and utilized for a variety of health conditions. One limitation of such surveys, which tend to be multiple choice for ease of assessment, is that patient-generated ideas or values are not assessed.