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How do patients interpret and respond to a novel patient-reported eastern cooperative oncology group performance status (ECOG)?

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Abstract

Purpose

Performance status is an important concept in oncology, but is typically clinician-reported. Efforts are underway to include patient-reported measures in cancer care, which may improve patient symptoms, quality of life and overall survival. The purpose of this study was to gain a preliminary understanding of how patients determined their physical performance status based on a novel patient-reported version of the Eastern Cooperative Oncology Group Performance Status (ECOG) scale.

Methods

We conducted qualitative interviews, including concept elicitation and cognitive interviewing as part of the Patient Reports of Physical Functioning Study (PROPS) to investigate how participants selected their answers to a novel patient-reported ECOG. Participants were administered the patient-reported ECOG and asked to describe devices and modifications used to keep up with daily activities.

Results

Participants generally understood the ECOG as intended. Participants with recent changes in status had some difficulty selecting an answer. Most participants used modifications and assistive devices in their daily lives but did not incorporate these into their rational for the ECOG.

Conclusion

The potential benefits of a patient-reported ECOG are numerous and this study demonstrates that participants were able to understand and answer the patient-reported ECOG as intended. We recommend future evaluation for the most-appropriate recall period, whether to include modifications in the ECOG instructions, and if increasing the number of response options to the patient-reported ECOG may improve confidence when providing an answer.

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Acknowledgements

We would like to thank the participants of our study for their willingness to share their insight and experiences with us. We recognize the significant commitment participation requires, without which we could not have completed this work. Additionally, we would like to thank Alexey Hernandez for assisting with data collection and interpretation and support throughout the study. TWL is a Scholar in Clinical Research of the Leukemia and Lymphoma Society.

Funding

This work was supported by the U.S. Food & Drug Administration (FDA) of the U.S. Department of Health and Human Services (HHS) (Contract 75F40120C00069). The contents are those of the author(s) and do not necessarily represent the official views of, nor an endorsement, by FDA/HHS, or the U.S. Government.

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Authors and Affiliations

  1. Center for Health Measurement, Department of Population Health Sciences, Duke University School of Medicine, Durham, North Carolina, United States

    Rebecca Fillipo, Katelyn E. Plyler, Debra M. Henke & Theresa Coles

  2. Division of Hematologic Malignancies and Cellular Therapy, Department of Medicine, Duke University School of Medicine, Durham, North Carolina, United States

    Thomas W. Leblanc

  3. Evinova, Durham, North Carolina, United States

    Cara Arizmendi

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  1. Rebecca Fillipo
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Contributions

RF and TC participated in conceptualization and original draft writing. KEP, CA, DMH, RF participated in data collection and analysis, and with TC, interpretation of results. TWL provided clinical insight and interpretation. All authors participated in reviewing and editing the manuscript.

Corresponding author

Correspondence to Rebecca Fillipo.

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Disclosures

TC received study funding from Pfizer and Merck during the conduct of this study, and had a consulting agreement with Regenxbio. TWL has received honoraria for consulting/advisory boards from AbbVie, Agilix, Agios/Servier, Apellis, Astellas, AstraZeneca, Beigene, BlueNote, BMS/Celgene, Genentech, GSK, Lilly, Meter Health, Novartis, and Pfizer; speaking related honoraria from AbbVie, Agios, Astellas, BMS/Celgene, GSK, Incyte, and Rigel; equity interest in Dosentrx and ThymeCare (stock options in privately-held companies); royalties from UpToDate; research funding from AbbVie, American Cancer Society, AstraZeneca, BMS, Deverra Therapeutics, Duke University, GSK, Jazz Pharmaceuticals, the Leukemia and Lymphoma Society, the National Institute of Nursing Research/ National Institutes of Health, and Seattle Genetics.

Ethical approval

This study was conducted in accordance with the Declaration of Helsinki. The study was approved by the Duke University Institutional Review Board (Pro00108611).

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All participants provided informed consent.

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Fillipo, R., Leblanc, T.W., Plyler, K.E. et al. How do patients interpret and respond to a novel patient-reported eastern cooperative oncology group performance status (ECOG)?. Qual Life Res (2024). https://doi.org/10.1007/s11136-024-03715-y

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