Project Summary

Background: Patient-reported outcome (PRO) measures are validated questionnaires that assess the impact of disease and treatment from the patient’s perspective. Both patients and clinicians support the value of PROs for promoting patient-centered care, but there are a large number of PRO questionnaires and no standardization of how PRO data are scored, scaled, or presented. As a result, patients and clinicians report difficulty interpreting the meaning of the scores, thereby limiting their use in practice.

Proposed Solution: Previous research has generated sufficient data to inform the development of recommendations for presenting PROs to meet the needs of patients and clinicians. The project team plans to engage a broad representation of international stakeholders through a series of in-person meetings (in Baltimore, Maryland) and other activities to review the results of previous studies, determine aspects of PRO data presentation that would benefit from standards, and advise on what those standards should be.

Objectives: The project’s overall objective is to develop evidence-based, stakeholder-driven recommendations for graphically presenting PRO data to patients and clinicians to promote clarity and interpretation accuracy, thereby facilitating patients’ and clinicians’ interpretation of PRO results and serving the long-term goal of promoting patient-centered care.

Activities: The project team proposes holding a series of consensus development meetings and associated activities to develop standards for PRO data presentation. This project addresses three different applications of PRO data in clinical practice: (1) using individual patients’ PRO data to monitor their functioning and well-being and inform their management; (2) presenting the results of comparative patient-centered research studies to patients in educational materials and decision aids to improve understanding of treatment options and inform decision making; and (3) presenting the results of comparative patient-centered research studies to clinicians to inform their understanding of the PRO impacts of different treatment options and inform their clinical care. These standards will be developed using a modified Delphi consensus process, a rigorous approach to developing evidence-based consensus among experts where uncertainty exists. Because the vast majority of data available is drawn from cancer populations, the project will focus specifically on oncology; however, the team expects the findings to be broadly applicable.

Project Outputs: The results of this project will be clear recommendations for how to present PRO data for each of the three applications. These recommendations can then be implemented and disseminated among end-users.

Patient and Stakeholder Engagement Plan: The key stakeholder groups for this project are cancer patients, cancer clinicians, and PRO researchers. The project team includes members from all of the key stakeholder groups, supplemented with a 10-member stakeholder advisory board that will provide additional stakeholder perspectives in conducting the project. Meeting invitees include additional patients, clinicians, researchers, and end-users.

Project Collaborators: The team’s key collaborating partner is the International Society for Quality of Life Research. Additionally, the project team has invited members of important patient, clinician, and research organizations and end-users (e.g., electronic medical records experts, medical decision experts, and medical journal editors) to attend the meetings.

Project Information

Claire Snyder, PhD
Katherine Smith, PhD, and Elissa Bantung, MHS
Johns Hopkins University

Key Dates

16 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: March 4, 2022