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electronic survey, methodology, oncology, patient-generated index, patient-reported outcome, patient voice, quality of life



  1. Tavernier, Susan S.
  2. Beck, Susan L.


Background: The patient-generated index (PGI) is an individualized measure of health-related quality of life. Previous work testing the PGI in the oncology setting identified threats to content validity due to navigational and computational completion errors using the paper format.


Objective: The purpose of this pilot study was to refine and evaluate the usability and acceptability of an electronic PGI (ePGI) prototype in the outpatient radiation oncology setting.


Methods: This pilot study used adaptive agile web design, cognitive interview, and survey methods.


Results: Three iterations of testing and refining the ePGI were required. Fifteen patients completed the refined ePGI using touch screen tablets with little or no coaching required. Nearly all participants rated the ePGI as "easy" or "very" easy to use, understand, and navigate. Up to one half stated they did not share this type of information with their clinician but felt the information on the ePGI would be useful to discuss when making decisions about their care. Eight clinicians participated, all of whom felt the ePGI was a useful tool to initiate dialogue about quality of life issues, reveal infrequent or unusual effects of treatment, and assist with symptom management.


Discussion: The pilot study indicates the ePGI may be useful for use at the point of care. Larger studies are needed to explore the influence it may have in decision-making and restructuring patient/provider communication.