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

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.

Department

Description

Provenance

Subjects

Cancer, Cognitive interviewing, Patient-reported outcomes, Performance status

Citation

Published Version (Please cite this version)

10.1007/s11136-024-03715-y

Publication Info

Fillipo, Rebecca, Thomas W Leblanc, Katelyn E Plyler, Cara Arizmendi, Debra M Henke and Theresa Coles (2024). How do patients interpret and respond to a novel patient-reported eastern cooperative oncology group performance status (ECOG)?. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation. 10.1007/s11136-024-03715-y Retrieved from https://hdl.handle.net/10161/31259.

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Scholars@Duke

Coles

Theresa Marie Coles

Associate Professor in Population Health Sciences

Theresa Coles, Ph.D., is a health outcomes methodologist with a focus on measuring and evaluating patient-reported outcomes (PROs) and other clinical outcomes assessments (COAs), integrating PRO measures for screening of symptoms in clinical care, and improving interpretation of patient-centered outcome scores for use in healthcare delivery and clinical research settings to inform decision making.

My research program is comprised of 2 pillars:

  1. Enhance the assessment of function (e.g., physical function, cognitive function) to inform decision-making
  2. Design patient-reported screening questionnaires to improve patient-centered care by measuring what matters

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