Advancing Patient-Reported Outcomes in Neuro-Oncology: Methods, Implementation and Impact

Neuro-oncology encompasses some of the most formidable challenges in modern healthcare, focusing on tumors of the central nervous system such as high-grade gliomas and metastatic brain diseases. These conditions often lead to profound neurological deficits, significant cognitive impairments, and decreased life expectancy, drastically affecting patients’ day-to-day experiences and overall well-being. While traditional outcome parameters like survival rates and radiological responses provide valuable clinical information, they are inadequate for capturing the multifaceted burden of neuro-oncologic disease or the evolving impact of increasingly aggressive multimodal treatment approaches. Recent studies highlight that health-related quality of life (hrQoL)—particularly as reported directly by patients—has become paramount in both research and clinical practice, challenging earlier paradigms that focused nearly exclusively on clinician-driven outcomes.In response, the integration of patient-reported outcome measures (PROMs) has gained momentum in neuro-oncology. PROMs offer validated tools to assess patients’ subjective symptoms, emotional well-being, cognitive functioning, and levels of autonomy. The pivotal shift towards recognizing patient perspectives has been accelerated by advancements in surgical, pharmacological, and supportive care, which now emphasize not only prolonging life but ensuring its quality. PROMs are now routinely regarded as vital complements to imaging and clinician assessments, informing shared decision-making, guiding symptom management, and enabling holistic, patient-centered care. Moreover, their implementation in clinical trials, routine practice, and health technology assessments is increasingly viewed as essential for a comprehensive evaluation of therapeutic interventions. Nonetheless, significant challenges persist, particularly related to cognitive and linguistic impairments, methodological heterogeneity, standardization across tumor types and treatment stages, and the effective translation of PROM data into actionable clinical pathways.This Research Topic aims to foster a comprehensive exploration of the evolving landscape of patient-reported outcome measures in neuro-oncology. The goal is to synthesize current concepts, highlight methodological progress, and illustrate clinical applications of PROMs, focusing on their significance for patient-centered outcomes and integrated care pathways. Through diverse contributions from clinical, methodological, and translational perspectives, this topic seeks to catalyze innovation and interdisciplinary collaboration while addressing persistent barriers to routine implementation. Key objectives include identifying best practices for PROM deployment, exploring strategies to enhance comparability and interpretability, and elucidating the practical implications for patient management and regulatory decision-making.The described research topic will critically examine both established and innovative approaches to integrating patient-reported outcomes in neuro-oncology, while considering relevant limitations and opportunities for future research. To gather further insights in the comprehensive application and evolution of PROMs in this field, we welcome articles addressing, but not limited to, the following themes:• Development, validation, and adaptation of PROMs for neuro-oncological populations• Strategies for handling cognitive and language impairments in patient self-reporting• Integration of PROM data into routine neuro-oncological practice and clinical trials• Measurement and management of hrQoL, symptom burden, emotional distress, and functional outcomes• Bridging the gap between PROM research and pragmatic clinical decision-making• Regulatory and methodological considerations for using PROMs in health technology assessment Topic editors: Maximilian Scheer, Franziska Maria Ippen, Corinna Seliger Source: https://www.frontiersin.org/research-topics/77169/advancing-patient-reported-outcomes-in-neuro-oncology-methods-implementation-and-impact