2. UroToday Home
  3. Center Of Excellence
  4. Non-Muscle Invasive Bladder Cancer
  5. From The Editor
Back to Non-Muscle Invasive Bladder Cancer    

Beyond Survival: Advancing Patient-Centric Bladder Cancer Care

A bladder cancer diagnosis creates many possible stressors for patients and caregivers: complex treatment decisions, time and financial burdens, the physical and emotional toll of treatment and recovery, sexual health concerns, and anxiety about disease recurrence.1-4

While tremendously exciting, our rapidly expanding therapeutic landscape can sometimes prolong and intensify these stressors for patients and caregivers, highlighting the need for patient-centric care. Here, I outline key features of such care and how we can build, expand, and sustain these practices in our clinics.

Defining patient-centric cancer care

Research shows that bladder cancer patients value much more than survival alone—they also prioritize outcomes such as quality of life, treatment costs/financial toxicity, and psychosocial well-being.6,7 In recent years, bladder cancer research and practice have begun prioritizing patient-centered outcomes and patient-centric care, or care that aligns with patients' values, preferences, and needs. Simply, put, patient-centric care considers what the patient wants, and provides treatment and support that patients and caregivers say they need.

This approach requires performing holistic needs assessments, providing plain-language education, involving both patients and caregivers in shared decision-making, routinely obtaining and evaluating patient-reported data (eg, on side effects, quality of life, and care perceptions), and connecting patients and caregivers with comprehensive, appropriate support at key points during the care pathway.8

Providing truly patient-centric care is not a simple undertaking, but it can greatly improve quality of life and reduce stress for patients and families—which is crucial, given that patients with bladder cancer historically have had worse quality of life than patients with other pelvic cancers.9

Clinical care

Recent years have seen a shift toward more patient-centric bladder cancer care. For example, compared to a decade ago, more hospitals and clinics have oncology nurse navigators and social workers to help pilot the care journey and link patients and caregivers with rehabilitation programs, peer support networks, individual counseling, financial aid, and other resources. Furthermore, providers and organizations are working to collect data on patient-reported outcomes (PROs) and care perceptions, and to use these data to improve care delivery.

However, more work is needed. One gap concerns patients from specific demographic and clinical subgroups. As one example, we should avoid overtreating frail patients, as well as patients with recurrent low-grade non-muscle invasive bladder cancer (NMIBC). For these individuals, the physical, psychological, and financial burden of frequent anesthesia, surgical resections and adjuvant therapy may not be worth their while, especially since it is known that repeated exposure to general anesthetics can accelerate cognitive decline in older patients.10 To avoid overtreatment, we should carefully ascertain patients’ values regarding quality of life (versus length of life) as part of shared decision-making. I always like to start by asking two things: “First, what’s the most important question you have about your cancer? And second, what’s most important to you—not only about the cancer, but in the bigger picture of your life?”

Such conversations require us to slow down, listen, observe, and ask questions—no easy undertaking during a busy day in the clinic. Yet, taking even a few minutes for these discussions can uncover key insights that shape more personalized and effective care. We need to create space for more meaningful conversations between clinicians and patients—conversations that guide care in alignment with patient values. Achieving this requires not only empowering advanced practice providers and nurse navigators to work at the top of their training, but also reducing the burdens of documentation, insurance processes, and other administrative demands that limit face-to-face time.

A unique resource that I had the pleasure of leading in collaboration with the World Bladder Cancer Patient Coalition (WBCPC) is their global patient experience survey.11 This initiative was launched to address critical knowledge gaps by capturing the lived experiences of bladder cancer patients and caregivers. It offers valuable insights for clinicians and researchers seeking to understand what truly matters to patients across the care continuum. Partnering with WBCPC and Bladder Cancer Advocacy Network (BCAN), the International Bladder Cancer Group (IBCG) has launched a Center for Patient Centric Care Initiatives.12 This collaborative effort aims to advance patient-centered approaches across the spectrum of bladder cancer care. Bringing together leading experts, patients, and advocates, the initiative will develop strategies to empower patients, personalize treatment, and promote holistic wellness. Key focus areas include tools and resources for shared decision-making, equitable access to care, and the integration of innovative technologies to improve patient outcomes.

Younger patients with bladder cancer also need carefully tailored care. Bladder cancer rates have risen in this population in recent decades, and these patients face unique challenges such as career disruption and extended survivorship issues that traditional educational materials and peer support networks may overlook.13 Age-specific patient navigation and focused survivorship groups can be very meaningful for our younger bladder cancer patients as they seek to address these unique challenges. To help address these needs, BCAN  and the IBCG have launched a joint initiative focused specifically on young-onset bladder cancer, aiming to develop tailored resources, education, and support for this growing patient population.

Women with bladder cancer are underrepresented in clinical trials and continue to experience delays in diagnosis and worse short-term survival compared with men.14 Contributing factors include inferior surveillance (such as attributing hematuria to a UTI without further investigation) and higher rates of complications during the immediate postoperative period, due in part to later-stage disease at presentation, greater surgical complexity, more comorbidities, anatomical differences, and variations in surgical management. 15-17 Sexual dysfunction is common after radical cystectomy in women, and many report wanting better and more pre-operative education, regardless of disease stage or receipt of chemotherapy.18 Better pre-operative education and strategies to address post-operative sexual side effects such as dyspareunia are needed. In addition, women may feel isolated in male-dominated bladder cancer communities and can benefit from support groups tailored for their unique needs. These populations need enhanced patient and provider education and tailored resources, such as peer-specific support.

Patients with bladder cancer who live in rural areas also are at risk for inferior outcomes. Studies have implicated delays in diagnosis, less clear communication from healthcare providers, and deficits in shared decision-making, such as not discussing bladder-sparing management options before proceeding to cystectomy.19 Overcoming these gaps requires a re-evaluation of communication strategies as well as healthcare infrastructure. Studies should investigate community-specific disparities and interventions such as telemedicine and programs linking local providers with specialists for education and consultation.

To meaningfully improve patient outcomes, clinicians need to be able to respond to issues in as close to real time as possible. In the randomized iBLAD study of patients with locally advanced or metastatic bladder cancer, clinicians were not alerted promptly when patient-reported symptomatic toxicities exceeded predefined thresholds.20 This was thought to contribute to the failure of PRO assessment to improve treatment completion and hospitalization rates. In addition, providers often receive aggregated patient experience data, which makes the scores hard to use to improve care delivery. Reporting stratified patient experience data would be more logical and helpful.

Clinical trials

Bladder cancer trials are beginning to ascertain a wider range of PROs—not only health-related quality of life (HRQOL), but also the impact of symptoms, mental health, and time and financial toxicity. Comprehensively assessing PROs can be time and resource-intensive in any discipline, and is particularly challenging within the fast-moving, competitive bladder cancer space. However, we are seeing incremental progress in this area. For example, CISTO is a prospective, observational cohort study of patients with BCG-unresponsive NMIBC that compares patient-reported outcomes (PROs) following radical cystectomy versus bladder-sparing therapies.21 By evaluating endpoints such as overall and bladder cancer–specific quality of life (QOL), financial toxicity, and both progression-free and cancer-specific survival, CISTO aims to generate pragmatic data to support shared decision-making. Uniquely, the study was designed with patient input and is the only prospective study to assess cystectomy outcomes in this population outside a randomized trial. Contrary to common assumptions, patients who underwent cystectomy had comparable physical functioning at 12 months to those receiving bladder-sparing therapy, with early declines recovering by six months. Moreover, cystectomy patients reported better one-year outcomes in global health, anxiety, depression, and financial well-being. While recurrence-free survival favored cystectomy, initial data showed worse progression-free survival, likely due to significant upstaging at surgery—highlighting clinicians’ ability to appropriately select patients for more aggressive treatment. As Dr. Gore notes in an interview with UroToday, extended NCI funding will support five-year follow-up, enabling exploration of treatment effect heterogeneity to further individualize care decisions.22

In addition, we need to habitually incorporate patient input when designing clinical trials and other prospective studies. The BCAN laid strong groundwork in this area when it launched initiatives like the BCAN Patient Survey Network, the Patient Empowerment through Engagement Research (PEER), and BCAN Bladder Cancer Summits. Insights from the Patient Survey Network have helped inform study design, including research questions and outcome measures. Patients are also becoming more engaged in plans for disseminating study results. In the CISTO study, patients provided input on research questions, outcomes measures, proposals, survey questionnaires, and recruitment strategies. Sustaining and expanding these approaches is crucial to make results as generalizable and relevant as possible.

Finally, we need to simplify and streamline patient access to clinical trials. Although we are witnessing explosive progress in many fields of oncology, only about 7% of patients enroll in cancer trials (versus historic participation rates of under 5%).23  Restrictive eligibility criteria in oncology trials is a well-documented challenge that limits patient participation, including in trials of new bladder cancer therapies.24 To address this problem, we should thoughtfully consider enrollment criteria when designing trials and avoid reflexively selecting exclusion criteria that lack an evidence base or biological rationale, as has sometimes been done in the past.25 Given the current era of precision oncology, patients also need more support to be linked to trials based on their molecular disease features.  

UroToday offers free, comprehensive videos on many aspects of patient-centric bladder cancer care, including mental health, shared decision-making, prehabilitation and exercise, coping after major interventions, practical guidance for improving treatment outcomes, and the role of patient advocacy groups in improving patient outcomes. These resources can support and empower clinicians, patients, and caregivers as they strive for better care, outcomes, and experiences throughout the bladder cancer journey.

More Bladder Cancer News From 2024-2025

The NIAGARA Study

About half of patients with MIBC relapse within 3 years after standard treatment with cisplatin-based chemotherapy and radical cystectomy. In the randomized, open-label, phase 3 NIAGARA trial, adding perioperative immunotherapy to standard treatment significantly improved overall survival and event-free survival. In the study, 1,063 patients with MIBC received either neoadjuvant and adjuvant durvalumab plus neoadjuvant gemcitabine-cisplatin followed by radical cystectomy, or standard-of-care chemotherapy and surgery alone.26 Median follow-up for OS was 46.3 months. Perioperative durvalumab produced an approximately 32% improvement in EFS and a 25% improvement in OS. Rates of serious and fatal adverse events were similar between arms, and durvalumab did not measurably compromise fitness for radical cystectomy. These results led to an NCCN guideline update in February 2025, with perioperative durvalumab, neoadjuvant cisplatin-based chemotherapy, and cystectomy being added as a Category 1 recommended regimen for patients with MIBC.27 We await NIAGARA data on quality of life and other secondary endpoints.

Adjuvant pembrolizumab for high-risk MIBC

Patients with MIBC are typically considered high-risk if they are ineligible for or decline neoadjuvant cisplatin-based chemotherapy, if their disease is >pT3 or higher, if they have lymph node involvement or microscopic positive surgical margins, and/or if they have persistent muscle-invasive disease despite neoadjuvant chemotherapy. In the phase 3 AMBASSADOR study, patients with high-risk MIBC had an approximately 15.4-month longer median disease-free survival with adjuvant pembrolizumab compared with observation after radical surgery.28 Among 702 patients randomized on a 1:1 basis, median disease-free survival was 29.6 months with pembrolizumab versus 14.2 months with observation (P=.003). As expected, grade 3 and higher events were more frequent in the pembrolizumab group (50.6% versus 31.6% in the control group). Five pembrolizumab recipients died from treatment-emergent adverse events (respiratory failure, organ failure, sepsis, and unknown causes), while 15 patients died from adverse events in the control group. Nonetheless, these data support the consideration of adjuvant pembrolizumab for patients with high-risk MIBC. Follow-up in this study is ongoing.

The secret of the care of the patient is in caring for the patient. – Dr. Francis Peabody

Written by: Ashish M. Kamat, MD, MBBS, Professor of Urology and Cancer Research and Wayne B. Duddleston Professor of Cancer Research at MD Anderson Cancer Center in Houston, Texas. Dr. Kamat serves as President of International Bladder Cancer Group, (IBCG), and Co-President of International Bladder Cancer Network.

References:

  1. Sahu A, Ghosh S, Pal S, et al. Prevalence, risk factors and survival of patients with synchronous and metachronous bladder cancer: a population-based study. BMC Cancer. 2024;24(1):514. doi:10.1186/s12885-024-13092-x
  2. Sharma R, Sharma S, Sood A, et al. Caregiver burden in bladder cancer patients with urinary diversion post-radical cystectomy and the need for comprehensive nursing education: a narrative literature review. J Multidiscip Healthc. 2024;17:1199-1212. doi:10.2147/JMDH.S456322
  3. MacLennan S, Skea Z, N’Dow J, et al. The patients’ experience of a bladder cancer diagnosis: a systematic review of the qualitative evidence. J Cancer Surviv. 2017;11(4):453-469. doi:10.1007/s11764-017-0603-6
  4. World Bladder Cancer Patient Stories. World Bladder Cancer Patient Stories website. Published 2024. Accessed May 18, 2025.  https://worldbladdercancer.org/bladder-cancer-patient-stories/
  5. Smith AB, Jaeger B, Pinheiro LC, et al. Patient-centered outcomes in bladder cancer. Curr Opin Urol. 2019;29(3):249-255. doi:10.1097/MOU.0000000000000607
  6. Gupta S, Hensley PJ, Li R, et al. Bladder preservation strategies in muscle-invasive bladder cancer: recommendations from the International Bladder Cancer Group. Eur Urol. Volume 0, Issue 0.
  7. Patient centred care. In: National Institute for Health and Care Excellence. Bladder cancer: diagnosis and management. London, UK: National Institute for Health and Care Excellence (UK); 2015. Accessed May 18, 2025.  https://www.ncbi.nlm.nih.gov/books/NBK356294/
  8. World Bladder Cancer Patient Coalition. WBCPC Patient Survey Report Executive Summary. World Bladder Cancer. Published June 2023. Accessed May 18, 2025.  https://worldbladdercancer.org/wp-content/uploads/2023/06/WBCPC-Patient-Survey-Report-Executive-Summary.pdf
  9. Catto JWF, Downing A, Mason S, et al. Quality of life after bladder cancer: a cross-sectional survey of patient-reported outcomes. Eur Urol. 2021;79(4):621-632. doi:10.1016/j.eururo.2021.01.052
  10. van Dijk D, de Groot M, Vermeer SE, et al. Anaesthesia as a risk factor for long-term cognitive decline: results of the Maastricht Aging Study. Eur J Anaesthesiol. 2025;42(5):468-477. doi:10.1097/EJA.0000000000002001
  11. World Bladder Cancer Patient Coalition. Patient and carer experiences with bladder cancer: findings from a global survey. Executive summary. Brussels, Belgium: World Bladder Cancer Patient Coalition; 2023. Accessed May 18, 2025.  https://worldbladdercancer.org/wp-content/uploads/2023/06/WBCPC-Patient-Survey-Report-Executive-Summary-2.pdf
  12. International Bladder Cancer Group. IBCG launches Centre for Patient-Centric Care Initiatives. World Bladder Cancer Patient Coalition. Published January 27, 2025. Accessed May 18, 2025.  https://worldbladdercancer.org/news_events/ibcg-launches-centre-for-patient-centric-care-initiatives/
  13. Zhang Y, Wang L, Zhang X, et al. A global, regional, and national epidemiological study of bladder cancer in adolescents and young adults from 1990 to 2021. SSRN. Published January 8, 2025. Accessed May 18, 2025.  https://papers.ssrn.com/sol3/Delivery.cfm/f6962ada-3cac-4905-b099-6dbde1686610-MECA.pdf?abstractid=5085573&mirid=1
  14. Pignot G, Bessaoud D, Bahloul P. Sex disparities in bladder cancer diagnosis and treatment. Cancers (Basel). 2024;16(23):4321. doi:10.3390/cancers16234321. 
  15. Shariat SF, Sfakianos JP, Droller MJ, et al. The effect of age and gender on bladder cancer: a critical review of the literature. BJU Int. 2010;105(3):300-308. doi:10.1111/j.1464-410X.2009.09076.x.
  16. Bukavina L, Mishra K, Mahran A, et al. Gender disparity in cystectomy postoperative outcomes: propensity score analysis of the National Surgical Quality Improvement Program database. J Clin Transl Sci. 2019;3(4):206-213. doi:10.1017/cts.2019.406.
  17. Siegrist T, Savage C, Shabsigh A, Cronin A, Donat SM. Analysis of gender differences in early perioperative complications following radical cystectomy at a tertiary cancer center using a standardized reporting methodology. Urol Oncol. 2010;28(1):112-117. doi:10.1016/j.urolonc.2009.04.012.
  18. Westerman ME, Bree KK, Kokorovic A, et al. What women want: radical cystectomy and perioperative sexual function educational needs. Urology. 2021;157:181-187. doi:10.1016/j.urology.2021.06.012.
  19. Filicevas A, Hensley PJ, Kamat AM. Experiences of patients with bladder cancer: a comparison of urban and rural areas. J Clin Oncol. 2024;42(4_suppl):568. doi:10.1200/JCO.2024.42.4_suppl.568.
  20. Kirkegaard C, Groenvold M, Aagaard J, et al. The iBLAD study: patient-reported outcomes in bladder cancer during oncological treatment: a multicenter national randomized controlled trial. Qual Life Res. 2023;32(12):3567-3578. doi:10.1007/s11136-023-03523-2.
  21. Smith AB, Lee JR, Lawrence SO, et al. Patient and public involvement in the design and conduct of a large, pragmatic observational trial to investigate recurrent, high-risk non–muscle-invasive bladder cancer. Cancer. 2021;127(21):4008-4016. doi:10.1002/cncr.33897.
  22. Gore JL. CISTO study: Comparing cystectomy vs bladder-sparing therapy for recurrent NMIBC [Video]. UroToday. https://www.urotoday.com/video-lectures/aua-2025/video/4826-cisto-study-comparing-cystectomy-vs-bladder-sparing-therapy-for-recurrent-nmibc-john-gore.html. Published 2025. Accessed May 18, 2025.
  23. Unger JM, Shulman LN, Fleury ME, et al. National estimates of the participation of patients with cancer in clinical research studies based on Commission on Cancer accreditation data. J Clin Oncol. 2024;42(16):2099-2109. doi:10.1200/JCO.23.01546.
  24. Hoffman-Censits J, Kanesvaran R, Bangs R, Fashoyin-Aje L, Weinstock C. Breaking barriers: addressing issues of inequality in trial enrollment and clinical outcomes for patients with kidney and bladder cancer. Am Soc Clin Oncol Educ Book. 2021;41:e174-e181. doi:10.1200/EDBK_320273.
  25. Mercier BD, Govindarajan A, Castro DV, et al. Eligibility criteria in advanced urothelial cancer clinical trials: an assessment of modernization and inclusion. JTO Clin Res Rep. 2025;6(3):100456. doi:10.1016/j.jtocrr.2025.100456.
  26. Powles T, Catto JWF, Galsky MD, et al. Perioperative durvalumab with neoadjuvant chemotherapy in operable bladder cancer. N Engl J Med. 2024. doi:10.1056/NEJMoa2408154.
  27. National Comprehensive Cancer Network. NCCN Clinical Practice Guidelines in Oncology: Bladder Cancer. Version 1.2025. Published February 2025.
  28. Apolo AB, Ballman KV, Sonpavde G, et al. Adjuvant pembrolizumab versus observation in muscle-invasive urothelial carcinoma. N Engl J Med. 2025;392(1):45-55. doi:10.1056/NEJMoa2401726.