Advancing PROs to support survivor-centered NMIBC care

Approximately 75% of patients diagnosed with bladder cancer present with non–muscle invasive disease.¹ For many of these individuals, non–muscle invasive bladder cancer (NMIBC) becomes a chronic illness defined by frequent interventions: recurrent staging with transurethral resections, repeated cycles of intravesical therapy, and regular surveillance with endoscopic procedures.² Each component of this care paradigm—resection, instillation, and surveillance—imposes its own symptom burden. For example, 1 week after transurethral resection of a bladder tumor (TURBT), one-third of patients report persistent suprapubic pain, two-thirds report genital pain and irritative voiding symptoms, and throughout recovery, nearly 10% experience clinically significant depression or anxiety.³ Ultimately, although individual procedures are often considered minor, the cumulative adverse effects of NMIBC care are frequent and compound over time.

The role of patient-reported outcomes

The primary goal of NMIBC treatment is to prevent disease recurrence and progression—an objective underscored by the morbidity of prolonged treatment and surveillance for recurrent disease, as well as the worse cancer-specific outcomes associated with progression.^4,5 Patient-reported outcomes (PROs) are a critical tool at every point along the NMIBC care continuum. Specifically, PROs can be used to identify patients’ struggles with treatments, a main driver of therapy nonadherence and discontinuation.⁶ Integrating PROs into care promotes symptom-directed intervention and proactive management of psychological distress. Finally, PROs inform shared decision-making on therapy choice and surveillance schedule.

PROs are essential for capturing the lived experience of bladder cancer survivors and ultimately optimizing survivorship care. The New Faces of Bladder Cancer 2026 Survey, administered by the Bladder Cancer Advocacy Network (BCAN), underscores patients’ desire for improved supportive care surrounding treatment.² This need is amplified by the recent expansion of novel therapies for NMIBC. These emerging treatments promote bladder preservation, increasing the number of patients living with non–muscle invasive disease and its associated treatment toxicities. Moreover, with multiple therapeutic options now available and no head-to-head comparisons of agents, PROs will serve as a critical differentiator to guide therapy selection.

Limitations of current instruments

The use of PROs in clinical trials is increasing.⁷ Bladder cancer trials evaluating novel therapies and comparing treatment strategies increasingly incorporate PRO end points.^8,9 However, even our best validated instruments, such as the European Organisation for Research and Treatment of Cancer Quality of Life Questionnaire-C30 and QLQ-NMIBC24, have notable limitations.¹⁰ These tools do not adequately capture patients’ degree of hematuria, systemic adverse events of BCG, anxiety related to cystoscopy and procedural burden, or disruption to work productivity and daily activities.^11-13 As a result, they provide an incomplete picture of the patient experience with NMIBC. Furthermore, the QLQ-NMIBC24 is designed exclusively for patients with non–muscle invasive disease. As such, patients who undergo cystectomy or those who progress to muscle-invasive disease are evaluated with different surveys, making longitudinal comparison across disease states challenging.¹⁰ Ultimately, current PRO tools are provider-created instruments that have been adapted to the bladder cancer care continuum, rather than indices built up from the survivor experience.

Alternative approaches to quantifying burden of care

Although patient-reported measures are most commonly quantified through validated surveys, alternative methods of characterizing the burden of NMIBC care exist. Qualitative interviews, for instance, have been used to evaluate patients’ perspectives on the ablative properties of the novel mitomycin reverse thermal hydrogel (Zusduri).⁸ This formulation enables tumor ablation without TURBT. Patients enrolled in the phase 3 clinical trial of this agent reported appreciating a nonsurgical alternative to resection, with many indicating they would choose hydrogel ablation over surgery if given the choice. Further, nonvalidated surveys have also been used to evaluate specific dimensions of the treatment experience. A BCAN patient survey network study highlighted the impact of intravesical therapy on patient work and daily function, with approximately one-third of surveyed patients reporting missing work to receive treatments and roughly one-quarter noting instillations adversely affected their ability to perform regular daily activities.¹⁴ Ultimately, qualitative and nonvalidated approaches to summarizing patient experiences with therapies highlight the importance of understanding the full impact of NMIBC therapy on quality of life. Finally, they also identify information that current PRO measures miss.

A new tool in development

Considering the importance of PROs and the limitations of available survey options, improved PRO assessment tools are in development. At the International Bladder Cancer Group Retreat in August 2025, multidisciplinary leaders in bladder cancer convened to discuss improving the measurement of bladder cancer–related toxicity.¹⁵ Following this meeting, a task force led by Sarah P. Psutka, MD, MS, initiated the development of a tool designed to more comprehensively capture the experiences of survivors living with bladder cancer.¹⁶ The group aims to develop and validate a PRO instrument that is applicable across multiple stages of bladder cancer, modular in design, and adaptable to accommodate future advances in treatment paradigms. Whereas prior instruments were developed by providers and subsequently reviewed by patients, this initiative aims to maintain bladder cancers survivors’ lived experience as its foundation.

Is there a role for remote monitoring?

Although PRO instruments work to capture the lived experience of patients, they are collected at discrete time points, often during health care encounters.^17,18 Remote monitoring can be utilized not only to evaluate patients in their daily lives, but also with nontraditional measures. Remote monitoring programs, administered by smartphones and wearable activity monitors, make symptom assessments frequent and within patients’ daily routine. Further, these programs can be used to monitor the impact of cancer care on biomarkers such as step count, which would add another facet to our understanding of NMIBC and therapy toxicity.

Conclusion

Although recurrence and progression remain essential clinical end points, PROs are a critical component of survivorship care for NMIBC. They offer a practical framework to identify treatment intolerance, guide symptom management, and deepen understanding of patients’ lived experiences with bladder cancer and its care pathways. PRO data should not remain descriptive. Instead, they should actively inform day-to-day clinical decision- making and be incorporated into guidelines to ensure patient-centered care is consistently reflected in practice. Regular use of PROs will be supported by novel bladder cancer–specific PRO measurement tools that are sensitive to the unique burdens of NMIBC and its treatments. Ultimately, integrating robust, disease-specific PROs into routine bladder cancer care represents a key step toward more truly patient-centered management.

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