Recalling what we thought we knew about recall periods: a qualitative descriptive study of how adults diagnosed with cancer use recall periods for patient-reported outcome items about physical function.
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2025-03
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Abstract
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In cancer studies, assessment of patients' physical function can provide insight into cancer-related symptoms and the side effects of treatment. Physical function can be assessed using patient-reported outcome measures (PROMs), which may or may not include a recall period-the amount of time the questionnaire asks the respondent to think back to answer the questions. More understanding is needed about how patients interpret and respond to items posed with different recall periods, and which recall period they actually use.Study design and setting
We conducted a qualitative study with 72 adults diagnosed with cancer to describe response processes when answering PROM items about physical function.Results
When describing their physical function during concept elicitation interviews, most participants recalled their functioning over 1 month or more. When presented with PROM items with no recall period, the most used period was more than 4 weeks. When presented with a 7-day recall, the most used period was 7 days. However, almost 30% of responses used recall periods greater than 1 week.Conclusion
Including a 7-day recall period improves recall consistency for patients when answering physical function PROM items, but there is still room for improvement. The inaccuracy of recall for PROMs in clinical trials influences the ability to calculate the change in treatment outcomes over time and may conceal or emphasize actual treatment effects.Type
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Coles, Theresa, Kate Plyler, Alexy Hernandez, Rebecca Fillipo, Debra M Henke, Cara Arizmendi, C Rory Goodwin, Thomas W LeBlanc, et al. (2025). Recalling what we thought we knew about recall periods: a qualitative descriptive study of how adults diagnosed with cancer use recall periods for patient-reported outcome items about physical function. Quality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation, 34(3). pp. 857–866. 10.1007/s11136-024-03847-1 Retrieved from https://hdl.handle.net/10161/33713.
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Scholars@Duke
Theresa Marie Coles
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 (PROMs for screening), and improving interpretation of patient-centered outcome scores for use in healthcare delivery and clinical research settings to inform decision making. I am excited by opportunities to use COA scores to support actionable decision-making in clinical care.
My research program is comprised of 2 pillars:
- Enhance the assessment of function (e.g., physical function, cognitive function) to inform decision-making
- Design patient-reported screening questionnaires to improve patient-centered care by measuring what matters
Applications of my work are in a range of conditions such as cancer, heart failure, orthopedics, hearing healthcare, sinusitis, Eustachian tube dysfunction, migraine, autoimmune conditions, and hematologic conditions.
Rebecca Fillipo
Rebecca Fillipo is a PhD student in Population Health Sciences interested in advancing methods to study the impact of climate change on health outcomes.
Courtney Rory Goodwin
Associate Professor of Neurosurgery, Radiation Oncology, Orthopedic Surgery.
Director of Spine Oncology,
Associate Residency Program Director
Third Year Study Program Director Neurosciences, Duke University School of Medicine
Director of Spine Metastasis, Duke Center for Brain and Spine Metastasis, Department of Neurosurgery
Duke Cancer Institute, Duke University Medical Center
Thomas William LeBlanc
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; www.palliativecareresearch.org). 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.
Bryce B. Reeve
Dr. Bryce Reeve is a Professor of Population Health Sciences and Professor of Pediatrics at Duke University School of Medicine. He also serves as Director of the Center for Health Measurement since 2017. Trained in psychometric methods, Dr. Reeve’s work focuses on assessing the impact of disease and treatments on the lives of patients and their caregivers. This includes the development of clinical outcome assessments using both qualitative and quantitative methods, and the integration of patient-centered data in research and healthcare delivery settings to inform decision-making. From 2000 to 2010, Dr. Reeve served as Program Director for the U.S. National Cancer Institute and oversaw a portfolio of health-related quality of life research in cancer patients. From 2010 to 2017, he served as Professor of Health Policy and Management at the University of North Carolina. From 2011-2013, Dr. Reeve served as President of the International Society for Quality of Life Research (ISOQOL). In 2015, he received the John Ware and Alvin Tarlov Career Achievement Prize in Patient-Reported Outcomes Measures. In 2017, 2018, 2019 and 2021, he was ranked in the top 1% most-cited in his respective field over the past 11-year period.
Kevin Phillip Weinfurt
Kevin Weinfurt, Ph.D., is the James B. Duke Distinguished Professor and Vice Chair of Faculty in the Department of Population Health Sciences at Duke University Medical Center. Dr. Weinfurt also holds faculty appointments in Psychology and Neuroscience, Philosophy, Psychiatry and Behavioral Sciences, Biostatistics and Bioinformatics, the Duke Clinical Research Institute, and the Trent Center for Bioethics, Humanities & History of Medicine. Dr. Weinfurt worked part-time for four years as a Special Governmental Employee with the U.S. Food and Drug Administration, developing guidance for the Patient-Focused Drug Development initiative. Dr. Weinfurt received his PhD in psychology at Georgetown University and did graduate work in the history of science and philosophy of mind at Linacre College, Oxford.
Dr. Weinfurt researches clinical outcome assessments, pragmatic trial methodology, and bioethics. Currently, Dr. Weinfurt is co-PI of the coordinating center for the NIH Health Systems Research Collaboratory, which is dedicated to improving understanding of how to conduct pragmatic clinical trials. Within the NIH Collaboratory, he has led or co-led work on bioethics, patient-reported outcomes, and disseminating lessons learned. He is currently an Associate Editor of Clinical Trials. He served on the Board of Directors for the International Society of Quality of Life Research and was a member of the Patient-Centered Outcomes Research Institute’s Clinical Trials Advisory Panel. Dr. Weinfurt served as a member of the Secretary’s Advisory Committee on Human Research Protections (SACHRP), which provides expert advice and recommendations to the Secretary of HHS on issues pertaining to protecting human subjects in research.
As an educator, Dr. Weinfurt has taught undergraduate and graduate courses in bioethics, health measurement, psychology, and research methods.
Areas of Expertise: Bioethics, Health Measurement, Health Services Research, and Health Behavior
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