Patient-reported outcomes (PROs) play a crucial and increasingly recognized role in non-Hodgkin’s lymphoma (NHL) research by providing direct insight into how patients experience their disease and its treatment. Unlike traditional clinical measures such as tumor size or survival rates, PROs capture the patient’s own perspective on symptoms, side effects, functional status, and overall quality of life. This patient-centered data enriches understanding of the disease impact beyond what can be observed or measured by clinicians alone.
In NHL research, PROs help identify the core symptom burdens that patients face, such as fatigue, disturbed sleep, and cognitive difficulties like trouble remembering. These symptoms significantly affect patients’ health-related quality of life (HRQoL), influencing physical and psychological functioning. By systematically collecting PRO data, researchers can quantify how much these symptoms interfere with daily life and well-being, which is essential for evaluating the true burden of NHL from the patient’s viewpoint.
Moreover, PROs serve as important indicators for clinical decision-making and intervention. For example, a symptom burden score above a certain threshold can signal the need for targeted supportive care to alleviate symptoms and improve quality of life. This approach ensures that treatment plans address not only the cancer itself but also the patient’s lived experience, potentially improving adherence and outcomes.
In clinical trials for NHL, incorporating PROs allows for a more comprehensive assessment of new therapies. While survival and tumor response remain primary endpoints, PROs provide valuable data on treatment tolerability, side effects, and impact on daily functioning. This information can guide regulatory decisions and help clinicians balance efficacy with quality of life considerations, especially in indolent or chronic forms of NHL where long-term management is common.
Technological advances have facilitated the use of electronic patient-reported outcome measures (e-PROMs), enabling real-time symptom monitoring and more frequent data collection. Studies have shown that e-PROM programs for lymphoma patients can lead to better clinical outcomes and reduced healthcare utilization by allowing earlier detection of symptom worsening and timely intervention.
PROs also contribute to understanding the heterogeneity of NHL patient experiences. Since NHL encompasses various subtypes with different clinical courses, PRO data can help tailor supportive care and follow-up strategies to specific patient groups, improving personalized care.
Despite their benefits, challenges remain in integrating PROs fully into NHL research. Issues such as missing data, variability in measurement tools, and the need for longitudinal studies to track symptom evolution over time limit current applications. However, ongoing research aims to validate PRO instruments and establish clinically meaningful cutoff points to enhance their utility.
In summary, patient-reported outcomes are vital in NHL research for capturing the patient’s voice, guiding symptom management, enriching clinical trial data, and ultimately improving patient-centered care. They shift the focus from solely disease-centered metrics to a holistic view that includes how patients feel and function throughout their cancer journey.
