Cancer Health Literacy Research Centre, Princess Margaret Cancer Centre, 585 University Avenue, ELLICSR PMB B-130, Toronto, ON, M5G 2N2, Canada.
Ambulatory Care, Princess Margaret Cancer Centre, Toronto, Canada.
Support Care Cancer. 2024 Sep 3;32(10):631. doi: 10.1007/s00520-024-08838-z.
Positive patient experiences can lead to better adherence to cancer treatment and greater patient health outcomes. The primary aim of this descriptive study was to determine whether commonly used cancer PREMs have been developed according to health literacy best practices. The secondary and third aims were to examine the development of PREMs and to assess their comprehensiveness against principles of patient-centered care.
To assess adherence to best practice literacy principles regarding readability and understandability of commonly used cancer PREMs, three validated readability calculators 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, the Picker framework was used to evaluate the comprehensiveness of PREMs against principles of patient-centered care.
Thirty-five PREMs studies met inclusion criteria for the study. The mean reading grade level of cancer PREMs was 9.7 (SD = 0.75, range = 8.2-11.2) with best practice recommendation being a grade 6 reading grade level. Twenty-eight PREMs were rated on understandability, with a mean score of 74% (SD = 10.6, range = 46-93%, with optimal score of greater than 80%). The mean number of items across PREMs was 49 (SD = 31, range = 13-136). Recommendations for the number of items to include in a questionnaire is 25-30 items. Most PREMs (n = 33, 94.3%) asked ≥ 1 double-barreled question. All PREMs addressed ≥ 2 patient-centered care principles.
Cancer PREMs included in this study did not meet evidence-informed 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 and that PREMs are designed to meet the needs of all patients.
积极的患者体验可以提高癌症治疗的依从性，改善患者的健康结果。本描述性研究的主要目的是确定常用的癌症 PREM 是否根据健康素养最佳实践制定。次要和第三目的是检查 PREM 的制定情况，并根据以患者为中心的护理原则评估其全面性。
为了评估常用癌症 PREM 的可读性和可理解性是否符合最佳实践的读写能力原则，使用了三个经过验证的可读性计算器和一个经过验证的工具。为了更好地了解 PREM 的开发方式，收集了有关调查项目、患者参与和专家咨询的数据。最后，使用 Picker 框架根据以患者为中心的护理原则评估 PREM 的全面性。
35 项 PREM 研究符合纳入研究标准。癌症 PREM 的平均阅读水平为 9.7（SD=0.75，范围 8.2-11.2），最佳实践推荐为 6 级阅读水平。28 项 PREM 进行了可理解性评估，平均得分为 74%（SD=10.6，范围 46-93%，最佳得分为 80%以上）。PREM 的平均项目数为 49（SD=31，范围 13-136）。问卷中建议包含的项目数为 25-30 个。大多数 PREM（n=33，94.3%）提出了≥1 个双管齐下的问题。所有 PREM 都涉及了≥2 个以患者为中心的护理原则。
本研究中纳入的癌症 PREM 不符合可读性和可理解性的循证标准。因此，我们可能对低健康素养人群的护理体验存在理解上的差距。未来 PREM 的开发应该让低健康素养的患者参与进来，以确保他们的观点得到准确的体现，并确保 PREM 的设计能够满足所有患者的需求。
