Patient Outcomes – Patient Reported

Presenting Patient-reported Outcomes To Promote Patient And Clinician Understanding And Use

  • PI & co-PIs:     Claire Snyder, PhD & Michael Brundage, MD, MSc
  • Funder:           Patient-Centered Outcomes Research Institute
  • Status:             Results Published

Patient-reported outcomes (PROs) (e.g., symptoms, quality of life) assess the impact of a health condition and its treatment from the patient perspective and can be used to promote patient-centered care. However, there are many different PRO questionnaires, and there is no standard way to score and present PRO results, making it difficult for patients and clinicians to understand and use PROs in practice. Given PROs’ potential to help clinicians and patients tailor care to a particular patient’s needs, research on how to present PRO data so that the results are accurately interpreted and are meaningful and useful for patients and clinicians is critical.

The study aims to (1) learn how current ways of presenting PRO results limit patient and clinician understanding; (2) develop new approaches for presenting PRO results to improve patients’ and clinicians’ ability to use the findings; and (3) evaluate how well the new approaches work in improving patient and clinician understanding and use of PRO data. The long-term objective is to develop best practices for presenting PRO data to patients and clinicians, thereby improving the ability of patients and clinicians to make treatment decisions to meet a particular patient’s needs.

Related Project

Stakeholder-Driven, Evidence-Based Standards for Presenting Patient-Reported Outcomes in Practice. This follow-up PCORI project developed 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.The project addressesed 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.

Snyder C, Smith K, Holzner B, Rivera Y, Bantug E, Brundage M. PRO Data Presentation Delphi Panel. Making a picture worth a thousand numbers:  Recommendations for graphically displaying patient-reported outcomes data. Qual Life Res. 2018 Oct 10 [Epub ahead of print].

Publications:

Brundage MD, Smith KC, Little EA, Bantug ET, Snyder CF, PRO Data Presentation Stakeholder Advisory Board. Communicating patient-reported outcome scores using graphic formats: results from a mixed methods evaluation. Quality of Life Research. 2015;24:2457-2472.

Smith KC, Brundage MD, Tolbert E, Little EA, Bantug ET, Snyder C, PRO Data Presentation Stakeholder Advisory Board. Engaging stakeholders to improve presentation of patient-reported outcomes data in clinical practice. Supportive Care in Cancer. 2016;24:4149-4157.

Bantug ET, Coles T, Smith KC, Snyder CF, Rouette J, Brundage MD, PRO Data Presentation Stakeholder Advisory Board. Graphical displays of patient-reported outcomes (PRO) for use in clinical practice: What makes a PRO picture worth a thousand words? Patient Education and Counseling. 2016; 99:483-490

Snyder CF, Smith KC, Bantug ET, Tolbert EE, Blackford AL, Brundage MD, PRO Data Presentation Stakeholder Advisory Board. What do these scores mean? Presenting patient-reported outcomes data to patients and clinicians to improve interpretability. Cancer. 2017;123:1848-1859.

Brundage MD, Blackford A, Tolbert E, Smith K, Bantug E, Snyder C; PRO Data Presentation Stakeholder Advisory Board. Presenting comparative study PRO results to clinicians and researchers: Beyond the eye of the beholder. Quality of Life Research. 2018 Jan;27(1):75-90.

Tolbert E, Brundage M, Bantug E, Blackford AL, Smith K, Snyder C; PRO Data Presentation Stakeholder Advisory Board. Picture this: Presenting longitudinal patient-reported outcome research study results to patients. Medical Decision-Making. 2018 Aug 22:272989X18791177.

Snyder C, Smith K, Tolbert E, Bantug E, Brundage M, PRO Data Presentation Stakeholder Advisory Board. Partnering with stakeholders using an example patient-reported outcomes project. Journal of Community and Supportive Oncology. 2017 Nov 9 [Epub ahead of print].

Tolbert E, Brundage M, Bantug E, Blackford AL, Smith K, Snyder C; PRO Data Presentation Stakeholder Advisory Board. In Proportion: Approaches for Displaying Patient-reported Outcome Research Study Results as Percentages Responding to Treatment. Qual Life Res. 2018 Nov 29  [Epub ahead of print].