Using the “Patient Generated Index” in Spine Surgery in an Appalachian Population

Abstract

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 written comments as well as compliance were analyzed. Findings indicate that the PGI in its earliest form did not meet acceptable levels for use in this Appalachian subspecialist 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 very important in any medical interaction but especially if their 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 settings.³ 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, wherein the patient is asked to list the five most important areas of their lives affected by their medical condition. Secondly the patient rates how much each of the previous areas has been affected by their 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”. In the third stage, patients are asked to “spend” 60 tokens on the area they would like to see the most improvement in. The 60 tokens are allocated according to the patient’s own priorities. A global index can be calculated by calculated 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 therefore 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. Unlike these surveys, the PGI presents a free-text design, coupled with a ranking of disability levels and importance, and has been utilized and validated in a variety of medical conditions.^4,5 For example, it has been utilized in low back pain⁶, as well as in adult spinal deformity surgery.⁷ However, it has not been previously utilized in an Appalachian population. Appalachia is a distinct cultural region and has been associated with an aging population, high poverty rates, and low educational levels.⁸ The objective of this feasibility study is to assess the utility and acceptability of the PGI for Appalachian patients with back pain.

Methods

After institutional review board approval, the PGI, along with Ruta’s previously validated instruction sheet⁴ (Appendix A) was administered by means of self-report to 80 new patients with back pain who presented for assessment in the neurosurgery clinic. This procedure mimicked the previous administration of the PGI in an earlier published pilot of PGI in a spinal deformity referral center⁷. Inclusion criteria included patient’s ≥ 18 years of age, first visit to the clinic, and currently experiencing back pain. The patients were identified by the research nurse and asked if they would consider participating. Those who agreed gave written informed consent. Participants were given a copy of the PGI, written instructions to complete the PGI, acceptability questionnaire (Figure1) as well as a copy of the informed consent. In addition, the patients were given brief verbal instructions, an overview of the PGI, and given the opportunity to ask questions prior to completing the PGI and acceptability survey. The completed surveys were collected at the end of the patient’s visit. The PGIs were assessed for compliance with instructions, including general content of stage 1 areas of impact, and compliance with numbering instructions for stages 2 and 3. Compliance data, any written comments, as well as the results of the acceptability survey were entered into a REDCap (Research Electronic Data Capture) secure web application for analysis.⁹ “Acceptability” was defined pre-hoc as a favorable response (6–10 on Likert scale) on 80% of survey questions.¹⁰ Compliance with instructions across all three stages was similarly assessed, and free-text comments were transcribed and analyzed using NVivo software.¹¹

Figure 1.

The acceptability survey completed by participants following completion of the PGI

Results

The acceptability survey was analyzed with “acceptable” being defined as favorable responses (6–10 on 10 point Likert scale) on 80% of survey questions (Table 1). None of our questions met the 80% goal for a 6 −10 response for acceptability from our participants.

Table 1.

Results of Acceptability Survey

PGI Acceptability Question	Number of Favorable Responses 6 and over	% of Survey Questions
The instructions were easy to follow	48	60%
I had enough time to complete this form	61	76%
I felt comfortable answering all questions honestly	56	70%
Stage 2 point assignment was easy to complete and understand	48	60%
Stage 3 point assignment was easy to complete and understand	51	64%

(N-80)

Completion rates for each stage were also assessed. Stage 1 was completed correctly 93.7% of the time, but Stage 2 had only a 58.2% completion rate and similarly a completion rate of only 63.3% for Stage 3.

Written comments included positive comments such as “I think this is good for patients and staff to have and share this type of info”, and “This form was easy to fill out and gave me a little comfort knowing you care”. Other feedback from the free text data included suggestions and some negative comments such as “make me want to go back to school”, “Stage 1 needs more explanation of what you are looking for”, “Stage 2 needs to total 100-best to worst to understand what is bad”, and “The 60 point system seems a bit abstract. Trying to pick a top priority is a little vague because positions of the lower ones would change if the higher ones were addressed”. Other comments included specific suggestions for improvement, complaints over the amount of paperwork, or unrelated comments such as patient names, suggesting lack of comprehension.

Discussion

The completion rates and acceptability results for the PGI did not meet acceptable levels for use in this Appalachian subspecialist clinic setting. Other researchers have found similar difficulties with patients self-completing the PGI in its original form. For example, Ruta et al.⁴, found that patients who lived in public housing, were less educated, or who were retired seems to have the most difficulty understanding and completing the PGI.

There were limitations with our study in that administration was during a previously scheduled patient visit in a fast paced clinic. Although 76% of participants indicated they had enough time to complete the survey, compliance could be improved with more time spent on teaching the participant on how to properly complete the form. This was also a one-time administration. It is expected that compliance would also improve over multiple administrations, which in turn would yield more useful information in terms of change in health expectations for the patient. Other limitations may include using paper and pen to administer the PGI, although this method has been the most frequently utilized in previous studies. Using a tablet or other electronic device might be easier as some participants suggested. This could allow the stages to be on separate pages and appear less confusing to the participant.

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 QOL for patients over time. The original PGI was well received by our patient population, which is mostly comprised of Appalachian residents and only one person declined to participate. Overall, the participants appreciated feeling “heard” and appreciated that the clinic staff were interested in their personal story and how back pain has impacted their QOL. Despite the positive comments, compliance was not acceptable and revisions are indicated prior to effective use in this clinical setting. It may be possible that in other clinical settings this tool may be utilized more successfully with a similar patient population. Next steps should include a focus group with Appalachian residents and health care providers to gain feedback on the PGI in order to increase compliance. This feedback will contribute to a revised PGI that would then be administered to a larger sample and validated against current QOL measures.

As outcomes are becoming more closely scrutinized and may play a role in “pay for performance” in the health care fields, selecting the most appropriate outcomes measures for the populations being studied or treated has evolved into a key aspect of outcomes monitoring. While the PGI has been validated across many medical conditions and health care settings, it does not, in its current form, reflect adequate acceptability and compliance for this Appalachian subspecialist patient population.