Cancer Health Literacy Research Centre, Cancer Education Program, Princess Margaret Cancer Centre, University Health Network, Cancer Education Program, Toronto, Ontario, Canada.
Patient Education, Cancer Care Ontario, Toronto, Ontario, Canada.
Cancer. 2019 Apr 15;125(8):1350-1356. doi: 10.1002/cncr.31928. Epub 2019 Jan 8.
The benefits of patient-reported outcome measures (PROMs) are well known; however, their readability has come into question because multiple PROMs have been found to be incomprehensible to patients. This is a critical safety and equity consideration because PROMs are increasingly being integrated into routine clinical practice. A key strategy for promoting patient comprehension is the use of plain language. The aim of this study was to determine whether PROMs routinely used in the cancer setting meet plain-language best practices.
To report the plain-language level of each PROM, readability (Fry Readability Graph, Simple Measure of Gobbledygook, Flesch Reading Ease, and FORCAST) and understandability assessments (Patient Education Materials Assessment Tool [PEMAT] for Printable Materials) were performed. PROMs at grade level 6 or lower and with PEMAT scores greater than 80% were considered to meet plain-language best practices. PROMs were divided into 4 domains (physical, emotional, social, and quality of life) and 17 dimensions (eg, pain was a dimension of the physical domain). A subanalysis was conducted to determine whether specific domains and dimensions were more likely to adhere to plain-language best practices.
More than half of the 45 PROMs evaluated (n = 33 [73%]) had a grade level higher than 6. Understandability scores ranged from 29% to 100%. The majority of the PROMs that did not meet plain-language best practices were within the physical and emotional domains and focused on the patient's symptom experience.
This evaluation shows that more than half of the most commonly used cancer PROMs do not meet plain-language best practices. Practice implications include the necessity for plain-language assessment during the PROM validation process, the consideration of plain language in PROM selection, and plain-language review and editing of low-scoring PROMs.
患者报告结局测量（PROM）的益处是众所周知的；然而，它们的可读性受到了质疑，因为已经发现许多 PROM 让患者难以理解。这是一个至关重要的安全和公平性考虑因素，因为 PROM 越来越多地被纳入常规临床实践。促进患者理解的一个关键策略是使用通俗易懂的语言。本研究的目的是确定在癌症环境中常规使用的 PROM 是否符合通俗易懂的最佳实践。
为了报告每个 PROM 的通俗易懂程度，我们进行了可读性（Fry 可读性图、简单的胡言乱语测量、Flesch 阅读舒适度和 FORCAST）和可理解性评估（用于可打印材料的患者教育材料评估工具[PEMAT]）。阅读水平在 6 级或以下且 PEMAT 得分大于 80%的 PROM 被认为符合通俗易懂的最佳实践。PROM 分为 4 个领域（身体、情感、社会和生活质量）和 17 个维度（例如，疼痛是身体领域的一个维度）。进行了一项亚分析，以确定特定的领域和维度是否更有可能符合通俗易懂的最佳实践。
超过一半的 45 个评估的 PROM（n=33 [73%]）的阅读水平高于 6 级。可理解性得分范围从 29%到 100%。不符合通俗易懂最佳实践的大多数 PROM 都在身体和情感领域内，并且侧重于患者的症状体验。
这项评估表明，超过一半的最常用的癌症 PROM 不符合通俗易懂的最佳实践。实践意义包括在 PROM 验证过程中进行通俗易懂的评估、在 PROM 选择中考虑通俗易懂的语言以及对低得分 PROM 进行通俗易懂的审查和编辑。
