Bridging Perspectives: How Canadian Patients and Caregivers View Quality of Life in Multiple Myeloma Compared to Validated Instruments

TL;DR

This study shows that current quality of life tools for multiple myeloma patients and caregivers may not fully capture their real-life experiences due to recent treatment advances.

Contribution

The study highlights the need for updated quality-of-life instruments that reflect modern treatment realities for multiple myeloma patients and caregivers.

Findings

Standard questionnaires showed only moderate correlation with self-perceived quality of life for patients and caregivers.

The MM-specific QLQ-MY20 had the lowest correlation with patient-reported quality of life.

Caregiver-reported CarGOQoL also showed moderate but not strong alignment with perceived quality of life.

Abstract

Validated quality of life tools are commonly used to assess the impact of multiple myeloma on patients, and validated tools are also available to evaluate the quality of life of caregivers. However, most of these tools were created before recent treatment advances that have changed how people live with the disease. In this nationwide Canadian study, patients and caregivers of patients with multiple myeloma completed standard questionnaires and rated their own quality of life. Questionnaire scores were only moderately correlated with patients’ and caregivers’ self-perceived quality of life, indicating that meaningful dimensions of daily life and treatment burden may be insufficiently captured by current validated questionnaires. These findings indicate that evolving treatment contexts have altered lived experiences and underscore the need for updated multiple myeloma- and caregiver-specific quality-of-life instruments to ensure assessments remain relevant and meaningful.

Background: Validated patient- and caregiver-reported outcome (PRO and CRO) questionnaires are widely used to assess quality of life (QoL) in multiple myeloma (MM). However, most were developed before recent therapeutic advances that have modified disease trajectories and may no longer fully reflect patients’ and caregivers’ experiences. Methods: A Canadian cross-sectional observational study was conducted in collaboration with the PROxy Network and Myeloma Canada. Patients with MM completed the EORTC QLQ-C30, EORTC QLQ-MY20, EQ-5D-5L, and ESAS-R questionnaires and caregivers of patients with MM completed the CarGOQoL. Both groups rated their perceived QoL using a numerical rating scale. The strength of associations between validated questionnaire global scores and self-perceived QoL was assessed using Spearman’s correlation coefficient (r). Results: Between October 2024 and February 2025, the study enrolled 305 patients and 104 caregivers. Moderate correlations were observed between patients’ perceived QoL and validated PRO global scores (range of r: 0.59 to 0.65). The MM-specific QLQ-MY20 showed one of the lowest correlations (r = 0.59; 95% confidence interval (CI) 0.51–0.66; p < 0.001). The caregiver-reported CarGOQoL also demonstrated a moderate association (r = 0.54; 95% CI 0.38–0.67; p < 0.001). Conclusions: Contemporary treatment advances, including prolonged survival and evolving side effect profiles, may not be reflected in currently available PRO and CRO instruments.

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