Tuinenburg Attie, Determann Domino, Quik Elise H, van der Willik Esmee M, Hofstra Geeske, Hallegraeff Joannes M, Vriend Ingrid, Warmerdam Lisanne, van Bommel Hester E, Boland Gudule, Oude Voshaar Martijn A H
National Health Care Institute (Zorginstituut Nederland), Diemen, The Netherlands.
Experimental Anatomy Research Group, Department of Physiotherapy, Human Physiology and Anatomy, Faculty of Physical Education and Physiotherapy, Vrije Universiteit Brussel, Brussel, Belgium.
Patient. 2025 Jan;18(1):65-76. doi: 10.1007/s40271-024-00710-w. Epub 2024 Aug 13.
Patient-reported outcomes measures (PROMs) are increasingly prevalent in healthcare and used for shared decision-making and healthcare quality evaluation. However, the extent to which patients with varying health literacy levels can complete PROMs is often overlooked. This may lead to biased aggregated data and patients being excluded from studies or other PROM collection initiatives. This cross-sectional study evaluates the comprehensibility of 157 well-known and widely used PROM scales using a comprehensibility checklist.
Pairs of two independent raters scored 157 PROM scales designed for adults included in the 35 sets of outcome information developed as part of the Dutch Outcome-Based Healthcare Program. The PROM scales were scored on the eight comprehensibility domains of the Pharos Checklist for Questionnaires in Healthcare (PCQH). Interrater agreement of domain ratings was assessed using Intraclass Correlation Coefficients or Cohen's kappa. Subsequently, final ratings were established through discussion and used to evaluate the domain-specific comprehensibility rating for each PROM scale.
Comprehensibility of a large number of PROM scales (n = 157), which cover a wide range of diseases and conditions across Dutch medical specialist care, was assessed. While most PROM scales were written at an accessible language level, with minimal use of medical terms, instruction clarity, number of questions, and response options emerged as significant issues, affecting a substantial proportion of PROM scales. Interrater agreement was high for most domains of the PCQH.
This study highlights the need for greater attention to the comprehensibility of PROMs to ensure their accessibility to all patients, including those with low health literacy. The PCQH can be a valuable tool in PROM development in addition to qualitative methods and in selection processes enabling comparison of comprehensibility between PROMs. However, the PCQH needs further development and validation for these purposes. Enhancing the comprehensibility of PROMs is essential for their effective incorporation in healthcare evaluation and decision-making processes.
患者报告结局测量指标（PROMs）在医疗保健领域越来越普遍，用于共同决策和医疗质量评估。然而，不同健康素养水平的患者能够完成PROMs的程度常常被忽视。这可能导致汇总数据有偏差，以及患者被排除在研究或其他PROM收集计划之外。这项横断面研究使用一份可理解性清单评估了157个知名且广泛使用的PROM量表的可理解性。
两组独立评分者对作为荷兰基于结局的医疗保健计划一部分而制定的35套结局信息中包含的157个针对成年人的PROM量表进行评分。这些PROM量表根据医疗保健问卷Pharos清单（PCQH）的八个可理解性领域进行评分。使用组内相关系数或科恩kappa系数评估领域评分的评分者间一致性。随后，通过讨论确定最终评分，并用于评估每个PROM量表的领域特定可理解性评分。
评估了大量涵盖荷兰医学专科护理中广泛疾病和状况的PROM量表（n = 157）。虽然大多数PROM量表的语言水平通俗易懂，医学术语使用最少，但说明清晰度、问题数量和回答选项成为重大问题，影响了相当一部分PROM量表。PCQH的大多数领域评分者间一致性较高。
本研究强调需要更加关注PROMs的可理解性，以确保所有患者（包括健康素养低的患者）都能使用。除定性方法外，PCQH在PROM开发以及在使PROMs之间可理解性比较成为可能的选择过程中可以是一个有价值的工具。然而，PCQH为此目的需要进一步开发和验证。提高PROMs的可理解性对于它们有效纳入医疗保健评估和决策过程至关重要。
