Resource Title

Integrating Patient-Reported Measures into Routine Cancer Care: Cancer Patients’ and Clinicians’ Perceptions of Acceptability and Value

Abstract

Introduction: Despite growing interest in integrating patient-reported outcome (PRO) measures of symptoms and functional status into routine cancer care, little attention has been paid to patients’ and clinicians’ perceptions of acceptability and value.

Methods: A two-phase qualitative study was conducted to develop a web-based PRO screening system with 21 items assessing symptoms (e.g., nausea) and functional status. Phase 1 involved cognitive interviews with 35 cancer outpatients (n=9 breast chemotherapy, radiation for prostate (n=8) or head and neck cancer (n=10), and n=8 bone marrow transplant [BMT]). In Phase 2, we evaluated the acceptability and perceived value of reviewing a PRO measure during real-time clinical encounters with 39 additional outpatients (n=10 breast, n=9 head and neck, n=10 prostate, n=10 BMT) and 12 clinicians (n=3 breast, n=2 head and neck, n=4 prostate, n=3 BMT). At least 20% of patients were ≥60 years, African American, or ≤ high school.

Results: Patients felt that their PRO summary of symptoms and functional status was helpful in discussing health issues with clinicians (92%), wanted to review their results with clinicians during future visits (82%), and would recommend it to other patients (87%). Clinicians found the PRO summary to be easy to interpret (83%), most helpful for documenting the Review of Symptoms (92%), and would recommend it to future patients (92%). Over 90% of clinicians reported that consultation time did not increase.

Conclusion: Both cancer patients and clinicians reported that discussing a PRO summary of symptoms and functional status during an outpatient visit was useful, acceptable, and feasible.

Use Case

Patient Care

Implementation Considerations

Adapting workflow to support PRO collection

Resource Types

Publications

Data Collection Tools/Healthcare Settings

Data Collection Tools: Web-based patient-reported outcome (PRO) survey completed on a tablet computer in waiting room ("Patient-Reported Symptom Monitoring system" with PROMIS and PRO-CTCAE items).

Setting: Academic medical center cancer outpatient clinics for breast chemotherapy, radiation for prostate or head and neck cancer, and bone marrow/stem cell transplant.

Goal: Two-phase qualitative study to determine cancer patients' and clinicians' perceptions of acceptability and value about reviewing a PRO measure during real-time clinical encounters.

Result: Both cancer patients and clinicians reported that discussing a PRO summary of symptoms and functional status during an outpatient visit was useful, acceptable, and feasible. Patients felt that their PRO summary of symptoms and functional status was helpful in discussing health issues with clinicians (92%), wanted to review their results with clinicians during future visits (82%), and would recommend it to other patients (87%). Clinicians found the PRO summary to be easy to interpret (83%), most helpful for documenting the Review of Symptoms (92%), and would recommend it to future patients (92%). Over 90% of clinicians reported that consultation time did not increase.

Generalizability to other settings and best practices


Generalizability: This study was limited to one large, comprehensive cancer center with small samples of patients and clinicians, although the academic medical center treats patients who are diverse in terms of age, education level, and race (African American). We used purposive sampling within each of these demographic groups to maximize diversity, but further research is needed to determine if results generalize to other academic centers, community hospitals, and patients of other races or Hispanic ethnicity. Future testing will also be necessary to determine when the PRO screener is sufficient for identifying problematic symptoms and when additional modules are necessary that are specific to types of cancer or treatments.

Best Practice Recommendations:
-Carefully select PRO measures that have validity and reliability information for your population of interest Click here to learn more.
-Before implementing PROs in clinical practice, it is critical to clarify goals and to assess the resources available Click here to learn more.
-Conduct cognitive interviews with intended population to ensure the questions are comprehensible and meaningful.
-Pre-test web-based systems with patients who are diverse in terms of demographic (age, literacy level, race/ethnicity) and clinical (stage, cancer type, treatment type, etc.) characteristics.
-Conduct feasibility testing to determine patients' and clinicians' perceptions of how the procedure could be improved.
-As PRO systems become increasingly complex, training clinicians on using and interpreting PRO measures will be critical for future success.

Acknowledgement of Funders

We are grateful to Sandra A. Mitchell, PhD, CRNP at the National Cancer Institute and Ethan Basch, MD at the University of North Carolina at Chapel Hill for reviewing a previous draft of this manuscript.