Listening to What Matters Most: Consumer Endorsed Patient Reported Outcome Measures (PROMs) for Use in Multiple Myeloma Clinical Trials: A Descriptive Exploratory Study

Hayley Beer; Holly Chung; Simon J Harrison; Hang Quach; Rebecca Taylor-Marshall; Laura Jones; Meinir Krishnasamy

doi:10.1016/j.clml.2023.03.008

Listening to What Matters Most: Consumer Endorsed Patient Reported Outcome Measures (PROMs) for Use in Multiple Myeloma Clinical Trials: A Descriptive Exploratory Study

Clin Lymphoma Myeloma Leuk. 2023 Jul;23(7):505-514. doi: 10.1016/j.clml.2023.03.008. Epub 2023 Apr 1.

Authors

Hayley Beer¹, Holly Chung², Simon J Harrison³, Hang Quach⁴, Rebecca Taylor-Marshall⁵, Laura Jones⁵, Meinir Krishnasamy⁶

Affiliations

¹ Clinical Haematology, Peter MacCallum Cancer Centre and Royal Melbourne Hospital, Melbourne, Victoria, Australia; Department of Programs and Services, Myeloma Australia, Victoria, Australia. Electronic address: hayley.beer@petermac.org.
² Academic Nursing Unit, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia; Department of Health Services Research and Implementation Science, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia.
³ Clinical Haematology, Peter MacCallum Cancer Centre and Royal Melbourne Hospital, Melbourne, Victoria, Australia; Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Victoria, Australia.
⁴ Department of Haematology, St. Vincent's Hospital, Melbourne, Victoria, Australia; Division of Medicine, Dentistry and Health Sciences, University of Melbourne, Victoria, Australia.
⁵ Department of Haematology, St. Vincent's Hospital, Melbourne, Victoria, Australia.
⁶ Academic Nursing Unit, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia; Department of Health Services Research and Implementation Science, Peter MacCallum Cancer Centre, Melbourne, Victoria, Australia; Sir Peter MacCallum Department of Oncology, University of Melbourne, Melbourne, Victoria, Australia; Research and Education Division, Victorian Comprehensive Cancer Centre, Melbourne, VIctoria, Australia.

PMID: 37087351
DOI: 10.1016/j.clml.2023.03.008

Abstract

Background: Patients with multiple myeloma (MM) experience some of the highest levels of symptom burden of all hematological malignancies. Therefore, assessment of quality of life (QoL) is critical for the delivery of patient-centered cancer care. Patient reported outcome measures (PROMs) are commonly used to measure QoL in people with MM. However, it is unknown whether measures used, are appropriate and informative to address issues that matter most to patients.

Aim: This exploratory study was designed to establish consumer endorsed PROMs to measure QoL in people with MM.

Method: This was a descriptive, exploratory study. Participants were invited to provide feedback on the acceptability, appropriateness, and practicability of ten commonly used PROMs via telephone-based, semi-structured interviews and surveys. Data were analyzed using a manifest content analysis approach and descriptive statistics.

Results: 26 individuals participated in the study. Participants emphasized the importance of selecting a suite of PROMs that captures the diversity of quality-of-life experiences and priorities reported over the course of treatment, while minimizing the burden of completing PROMs. Based on these criteria, a suite of three PROMs - the MyPOS, the Brief Fatigue Inventory, and COST-FACIT were endorsed by study participants.

Conclusion: To our knowledge, this is the first study of its kind to establish a suite of consumer-endorsed PROMs for use in clinical trials in patients with MM. Ensuring that the patient voice is at the center of advances in cancer treatment is a hallmark of quality cancer care.

Keywords: Patient experience; Quality of life.

Publication types

Research Support, Non-U.S. Gov't

MeSH terms

Humans
Multiple Myeloma* / therapy
Patient Reported Outcome Measures
Quality of Life
Surveys and Questionnaires