Evaluating Cancer Patient-Reported Experience Measures: Readability and Implications for Health System Improvements

Abstract Purpose Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. However, it is unclear whether patient-reported experience measures (PREMs) are accessible to patients of all literacy levels. The primary aim of this study was to determine whether the most commonly used PREMs in cancer care meet health literacy best practices. The secondary and third objectives were to examine the development of PREMs and to assess their comprehensiveness.Methods In order to assess the readability and understandability of common cancer PREMs, three readability calculcators and a validated instrument were utilized. To better understand how PREMs were developed, data about survey items, patient involvement and expert consultation were collected. Finally, to evaluate comprehensiveness of canceer PREMs, the Picker principles of patient-centered care framework was used.Results The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, Range = 8.2–11.2). Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, Range = 46–93%). The mean number of items across PREMs was 49 (SD = 31, Range, 13–136), and vast majority of PREMs (n = 33, 94.3%) asked ≥ 1 double-barrelled question. All PREMs addressed ≥ 2 patient-centered care principles.Conclusion Cancer PREMs did not meet the acceptable thresholds for readability and understandability. As such, it is possible that there may be gaps in how we understand the care experiences of low health literacy populations. Future development of PREMs should engage patients with low health literacy to ensure their perspectives are accurately captured.