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Evaluating Comprehensibility of 157 Patient-Reported Outcome Measures (PROMs) in the Nationwide Dutch Outcome-Based Healthcare Program: More Attention for Comprehensibility of PROMs is Needed

Author

Listed:
  • Attie Tuinenburg

    (National Health Care Institute (Zorginstituut Nederland))

  • Domino Determann

    (National Health Care Institute (Zorginstituut Nederland))

  • Elise H. Quik

    (National Health Care Institute (Zorginstituut Nederland))

  • Esmee M. Willik

    (National Health Care Institute (Zorginstituut Nederland))

  • Geeske Hofstra

    (National Health Care Institute (Zorginstituut Nederland))

  • Joannes M. Hallegraeff

    (National Health Care Institute (Zorginstituut Nederland)
    Vrije Universiteit Brussel)

  • Ingrid Vriend

    (National Health Care Institute (Zorginstituut Nederland))

  • Lisanne Warmerdam

    (National Health Care Institute (Zorginstituut Nederland))

  • Hester E. Bommel

    (Dutch Centre of Expertise on Health Disparities)

  • Gudule Boland

    (Dutch Centre of Expertise on Health Disparities)

  • Martijn A. H. Oude Voshaar

    (National Health Care Institute (Zorginstituut Nederland)
    Erasmus Medical Center)

Abstract

Introduction 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. Methods 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. Results 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. Conclusion 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.

Suggested Citation

  • Attie Tuinenburg & Domino Determann & Elise H. Quik & Esmee M. Willik & Geeske Hofstra & Joannes M. Hallegraeff & Ingrid Vriend & Lisanne Warmerdam & Hester E. Bommel & Gudule Boland & Martijn A. H. O, 2025. "Evaluating Comprehensibility of 157 Patient-Reported Outcome Measures (PROMs) in the Nationwide Dutch Outcome-Based Healthcare Program: More Attention for Comprehensibility of PROMs is Needed," The Patient: Patient-Centered Outcomes Research, Springer;International Academy of Health Preference Research, vol. 18(1), pages 65-76, January.
    • Handle: RePEc:spr:patien:v:18:y:2025:i:1:d:10.1007_s40271-024-00710-w
    DOI: 10.1007/s40271-024-00710-w
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