Patient perception of high-risk non-muscle-invasive bladder cancer

Treatment burden and sex-specific differences

Authors

  • Andrea Kokorovic Department of Urology, Dalhousie University, Halifax, Nova Scotia, Canada,
  • Wassim Kassouf Department of Surgery (Urology), McGill University Health Center, Montreal, Quebec, Canada,
  • Nimira S. Alimohamed Department of Medicine, Division of Medical Oncology, Arthur JE Child Comprehensive Cancer Centre, University of Calgary, Calgary, Alberta, Canada
  • Peter C. Black Department of Urologic Sciences, University of British Columbia, Vancouver, British Columbia, Canada
  • Girish S. Kulkarni Divisions of Urology and Surgical Oncology, Department of Surgery, University Health Network, University of Toronto, Toronto, Ontario, Canada
  • Normand Blais Division of Medical Oncology and Hematology, Department of Medicine, Centre Hospitalier de l'Université de Montréal; Université de Montréal, Montreal, Quebec, Canada
  • Aly Khan A. Lalani Department of Oncology, Juravinski Cancer Centre, McMaster University, Hamilton, Ontario, Canada,
  • Srikala S. Sridhar Division of Medical Oncology, University of Toronto, Princess Margaret Cancer Centre, Toronto, Ontario, Canada
  • Mia Unsworth Adelphi Real World, Bollington, United Kingdom
  • Emilia Biondi Adelphi Real World, Bollington, United Kingdom
  • Jacob Skilling
  • Brendan Osborne Johnson & Johnson, Toronto, Ontario, Canada
  • Marie Deault-Bonin Johnson & Johnson, Toronto, Ontario, Canada
  • Christopher J. D. Wallis Division of Urology, Department of Surgery, University of Toronto; Mount Sinai Hospital; Department of Surgical Oncology, University Health Network, Toronto, Ontario, Canada

DOI:

https://doi.org/10.5489/cuaj.9844

Keywords:

bladder cancer, patient experience, Gender differences, treatment burden, survivorship

Abstract

Introduction: Patients with high-risk non-muscle-invasive bladder cancer (HR-NMIBC) often experience significant emotional distress related to the ongoing demands of disease management, including treatment-related adverse events, and concerns about disease recurrence or progression. This study assessed real-world emotional, physical, and socioeconomic burden of HR-NMIBC in Canada, and explored sex-specific differences.

Methods: A cross-sectional survey collected data from physicians who were selected based on actively managing HR-NMIBC patients and patients with HR-NMIBC in Canada. Data included symptoms at diagnosis, treatment experience, patient-reported outcomes (PROs), and sex-specific differences on treatment.

Results: Twenty-one physicians provided chart-review data for 126 HR-NMIBC patients (92 male, 34 female). PRO data were available for 78 patients (seven of whom had corresponding physician records and 71 who were obtained separately through Bladder Cancer Canada). Patients reported a broader range and higher prevalence of symptoms at diagnosis than physicians documented, notably nocturia (32% vs. 7%), bladder pain (13% vs. 1%), and fatigue (27% vs. 5%). Bacillus Calmette-Guérin (BCG) was the most common first-line treatment (62%), yet 22% of patients were dissatisfied overall, and 19% found it poorly tolerable. Patients reported significant logistical strain from frequent consultations, as well as emotional distress, including anxiety and depression. Women reported more urinary symptoms (e.g., nocturia: 50% vs. 25%, p=0.0273), and experienced greater employment disruption (24% vs. 10%) and caregiver needs (32 vs. 14 hours/week) than men.

Conclusions: HR-NMIBC imposes significant physical, emotional, and socioeconomic burdens, with notable discrepancies between physician and patient perceptions of symptoms and treatment impact. Sex-specific differences highlight the need for tailored patient-centered care strategies.

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Published

2026-10-19

How to Cite

Kokorovic, A., Kassouf, W., Alimohamed, N. S., Black, P. C., Kulkarni, G. S., Blais, N., … Wallis, C. J. D. (2026). Patient perception of high-risk non-muscle-invasive bladder cancer: Treatment burden and sex-specific differences. Canadian Urological Association Journal, 21(2). https://doi.org/10.5489/cuaj.9844

Issue

Vol. 21 No. 2 (2027): CUAJ February

Section

Original Research

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