Making a picture worth a thousand numbers: recommendations for graphically displaying patient-reported outcomes data

Area of Science:

• Health Services Research
• Patient-Centered Care
• Clinical Informatics

Background:

• Patient-reported outcomes (PROs) are valuable for patient-centered care but face interpretation challenges due to varied scoring and reporting methods.
• Limited understanding and use of PRO data in clinical practice hinder its full potential.

Purpose of the Study:

• To develop stakeholder-engaged, evidence-based recommendations for displaying PRO data.
• To improve the understanding and utilization of PRO data in clinical management, patient education, and research publications.

Main Methods:

• A modified Delphi process involving diverse stakeholders (patients, clinicians, researchers, vendors, editors).
• Review of data display issues and evidence base via webinars and surveys.
• Consensus development through in-person meetings and post-meeting ratification.

Main Results:

• Recommendations address data directionality and score meaning for individual and research applications.
• Specific guidance provided for presenting individual patient data (e.g., charts, highlighting concerning scores).
• Methods for displaying research results include handling normed data, statistical/clinical significance, and outcome proportions.

Conclusions:

• The developed recommendations aim to optimize the accurate and meaningful interpretation of PRO data.
• Standardized PRO data display will enhance clinical decision-making and research dissemination.