Update of the EORTC Multiple Myeloma module (QLQ-MY20): Results from qualitative interviews with patients and healthcare professionals

In the world of cancer care, there is a growing recognition that survival is only one part of the story. For decades, the primary goal of medicine was simply to keep patients alive. Today, with many cancers becoming manageable chronic conditions, the focus has shifted toward how well those patients live. This shift relies on a tool called a patient-reported outcome measure. Think of it as a specialized questionnaire where patients describe their own experience of illness and treatment, rather than a doctor guessing how they feel based on blood tests or scans. These questionnaires are vital because they capture the invisible burdens of disease: the fatigue, the pain, the worry, and the daily struggles that define a person's quality of life. For multiple myeloma, a cancer of the blood and bone marrow, doctors and researchers have long used a specific questionnaire to track these experiences. However, the medical landscape for this disease has changed dramatically since that questionnaire was first created. New drugs are stronger, treatments last longer, and patients are living with the disease for many years, often cycling through different therapies. The old questions, written for a different era of treatment, risk missing the specific side effects and challenges that modern patients face today.

To address this gap, a team of researchers from across Europe and the Middle East set out to update the standard questionnaire for multiple myeloma. They began by looking at the vast amount of medical literature published over the last few decades, searching for every possible symptom and side effect associated with the disease and its treatments. They also examined the safety labels of dozens of approved drugs to see what side effects manufacturers had identified. This initial review generated a long list of potential issues, which they then took to the people who know the experience best: the patients themselves and the doctors who treat them. The researchers conducted in-depth, one-on-one interviews with ninety-three patients and twenty healthcare professionals. These conversations took place in eight different countries, ensuring a wide variety of voices and cultural perspectives were heard. The goal was not just to ask patients if they felt tired or in pain, but to discover what specific problems were most important to them now, and to identify any new issues that the old questionnaire had completely overlooked.

The interviews revealed a clear picture of the modern multiple myeloma experience. While the classic symptoms of the disease, such as bone pain and fatigue, remained central, the patients described a new set of challenges driven by the powerful, continuous therapies they now receive. The researchers found that patients frequently struggled with specific types of nerve damage, often described as tingling in the hands or feet, as well as issues with balance, muscle cramps, and swelling in the limbs. They also reported problems with their eyesight, such as blurry vision, and oral health issues that were not previously emphasized. When the patients and doctors were asked to rate the importance of various potential questions, a clear pattern emerged. Some topics that were once considered essential, such as worries about dying or feeling less attractive, were rated as less relevant by the current group of patients. Conversely, physical symptoms like muscle spasms, cold hands and feet, and weight loss were flagged as highly significant. The team used these insights to build a new framework, grouping related symptoms together to create a more focused and accurate tool.

The result of this extensive work is a proposed update to the questionnaire, now called the QLQ-MY24. This new version expands the original twenty questions to twenty-four. While ten new issues were identified from the literature and interviews, the team generated thirteen new items to capture these concepts, some of which were split to avoid double questioning. This resulted in a net increase of four items. The new questions specifically target the side effects of newer drugs, including detailed inquiries about nerve pain, swelling, and balance. At the same time, the team removed several questions that were no longer deemed essential, streamlining the tool to reduce the burden on patients while increasing its accuracy. These removed items included questions about pain in the arm or shoulder, chest pain, thirst, hair loss distress, heartburn, eye irritation, and feeling less attractive. The new structure organizes symptoms into logical groups, such as pain, nerve issues, and infection, rather than the broader categories used in the past. This approach allows doctors and researchers to see exactly which aspects of a patient's life are most affected by their treatment. The researchers emphasize that this is a provisional update; the new questionnaire will undergo further testing to ensure it works reliably across different populations and languages. However, the initial findings suggest that by listening directly to patients and adapting to the changing medical landscape, the medical community can better understand and support the quality of life for those living with multiple myeloma.