While many efforts in cancer detection and treatment have led to improved morbidity and mortality outcomes, that is not necessarily the case with bladder cancer. In fact, despite improved patient awareness, driven by advocacy groups like the Bladder Cancer Advocacy Network (BCAN) and well-defined guidelines for diagnosis and treatment (AUA/SUO, NCCN), the 5-year survival rates for bladder cancer have remained largely unchanged since the 1990s.
There may be multiple reasons for this, but one major cause to consider is the continued poor compliance with established guidelines. In fact, multiple studies have shown that despite having well-established guidelines and increased patient awareness of bladder cancer, compliance remains low.
A study by Schrag et al found that only 40% of patients were compliant with the recommended schedule of bladder cancer surveillance (J Natl Cancer Inst 2003; 95:588-97). Chamie et al found significant underutilization of care in patients with high-grade, nonmuscle-invasive bladder cancer (NMIBC), with only one case of comprehensive compliance out of 4,545 eligible patients (Cancer 2011; 117:5392-401). A more recent study conducted within the Veterans Affairs system by Han et al and presented at the Veterans Affairs Urological Forum at the 2018 AUA annual meeting concluded that one-third of veterans with high-risk NMIBC do not receive the recommended surveillance regimen, defined as one cystoscopy every 4 months for the first 2 years after diagnosis.
While possible causes to consider for the poor compliance were identified, such as provider and patient attitudes and perception of risk, direct analysis of any patient component was not possible in these studies as there were no follow-up mechanisms in place to survey patients. Having the opportunity to question patients about their experience could perhaps provide a more thorough understanding about poor compliance from the patient’s perspective. This in turn could also play an important role in the ongoing shift to value-based medicine, not only in improving outcomes but also in improving patient satisfaction.
The other end of the scope
Cystoscopy has been the gold standard for bladder cancer detection for over 100 years. Over time, the technique and equipment have evolved, but the mechanism for direct bladder observation has remained basically the same, ie direct visualization of the bladder mucosa. While effective, it is also invasive and is at least in part responsible for patient non-compliance.
A recent patient survey conducted by BCAN addressed a number of questions and concerns that could help lead to a better understanding of patients’ poor compliance with surveillance guidelines.
The BCAN survey was completed by over 1,000 participants, more than 900 of whom were surveillance patients in the United States. A $10 gift card was offered as incentive to minimize survey participant bias. A primary objective of the survey was to assess patients’ attitudes about cystoscopy and to quantify their feelings across four primary measures: discomfort, pain, anxiety, and embarrassment. Attitudes and feelings were self-reported by surveillance patients on a continuum ranging from mild to severe for each of the four measures. While less than 30% of U.S. patients experienced moderate to severe embarrassment, results were higher for discomfort, pain and anxiety (figure).
In summary, across these measures, up to 65% of U.S. patients have experienced moderate to severe discomfort, pain, or anxiety. Qualitative comments offered by survey participants further reinforce the negative experience of cystoscopy and support that the invasiveness of cystoscopy could contribute to non-compliance with the guideline-recommended surveillance protocol.