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



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.


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.


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.


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.





Published Version (Please cite this version)


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

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Thomas William LeBlanc

Associate Professor of Medicine

I am a medical oncologist, palliative care physician, and patient experience researcher, and serve as Chief Patient Experience and Safety Officer for the Duke Cancer Institute, as well as the Director of Outcomes Research in the Division of Hematologic Malignancies and Cellular Therapy. My clinical practice focuses on the care of patients with hematologic malignancies, with a particular emphasis on myeloid conditions and acute leukemias including acute myeloid leukemia (AML), acute lymphocytic leukemia (ALL), myelodysplastic syndromes (MDS), and myeloproliferative neoplasms (MPNs / MPDs, CML, PV, ET, MF), as well as rarer and related diseases like BPDCN.  

As founding Director of the Duke Cancer Patient Experience Research Program (CPEP), my research investigates common issues faced by people with cancer, including issues of symptom burden, quality of life, psychological distress, prognostic understanding, and treatment decision-making. This work aims to improve patients' experiences living with serious illnesses like blood cancers, including the integration of specialist palliative care services to provide an extra layer of support along with their comprehensive cancer care. More broadly, our team in CPEP conducts various studies of patient experience and outcomes issues in oncology, including retrospective chart review studies, comparative effectiveness work, prospective observational studies and registries, and qualitative research, along with efforts to facilitate the integration of patient-generated health data (PGHD) into routine cancer care processes, such as with electronic patient-reported outcome measures (ePROs) and other mobile health interventions (mHealth). Our team has conducted and participated in several pivotal clinical trials of palliative care integration into cancer care, including among patients with AML, those undergoing stem cell transplantation, and those receiving treatment for advanced lung cancer.

This work has led to recognition as an "Inspirational Leader under 40" by the American Academy of Hospice and Palliative Medicine (AAHPM), "Fellow" status from the Academy in 2016, the 2018 international "Clinical Impact Award" from the European Association for Palliative Care, and the AAHPM "Early Career Investigator" award in 2020. I served as 2017-18 Chair of the ASCO Ethics Committee, and Chaired the Scientific Review Committee of the NIH/NINR-funded Palliative Care Research Cooperative Group through June 2023 (PCRC; I have served on various national guideline panels for AML and for palliative/supportive care issues in oncology, and was inducted as a Fellow of the American Society of Clinical Oncology (FASCO) in 2021, then served as the Chair of the Education Program of the ASCO 2024 annual meeting. To date I have published over 240 Medline-indexed articles, and several chapters in prominent textbooks of oncology and palliative medicine.


Theresa Marie Coles

Assistant 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 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 3 pillars:

  1. Enhance the assessment of physical function and related concepts to inform decision-making
  2. Improve interpretability of PRO scores
  3. Design and implement screeners to improve patient-centered care by measuring what matters

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