This is a report of the nursing study ‘Withdrawing from treatment for bladder cancer: patient experience of BCG instillations’, which is awaiting publication in the International Journal of Urological Nursing. The primary aim of this mixed-methods study was to explore how patients’ experience with Bacillus-Calmette Guerin (BCG) treatment influenced their early withdrawal. We did not set out to investigate which strategies could potentially keep patients on treatment for a longer period, these became apparent as the research progressed. The reason for undertaking this research was the withdrawal rate of up to 86% (Lamm et al., 2000). This is a report of the nursing study ‘Withdrawing from treatment for bladder cancer: patient experiences of BCG instillations’, which is awaiting publication in the International Journal of Urological Nursing. The primary aim of this mixed-methods study was to explore how patients’ experience with Bacillus-Calmette Guerin (BCG) treatment influenced their early withdrawal. We did not set out to investigate which strategies could potentially keep patients on treatment for a longer period, these became apparent as the research progressed. The reason for undertaking this research was the withdrawal rate of up to 86% (Lamm et al., 2000).
Mycobacterium bovis bacillus
In the UK alone, there are 10,000 new diagnoses annually of bladder cancer. It is recognised as the second most common urological cancer in the UK and USA (Tobias & Hochhauser, 2010). BCG as first discovered at the turn of the 20th century, when Albert Calmette and Camille Guerin isolated an attenuated live strain of Mycobacterium bovis bacillus, a live vaccine against tuberculosis, known as BCG (Crispen, 1989). It was not until the late 1970s that BCG started to be used for bladder cancer following studies by Morales (Morales et al., 1976). So why the high withdrawal rate?
The answer may in part be due to the fact that very little is known about patients’ experience with this intravesical treatment. Some authors have suggested that there is a cumulative effect of the BCG installations on the patient leading to symptoms such as pain, flu-like symptoms, etc. (Berry et al., 1996; Heiner & Terris, 2008; Orihuela et al., 1987) which lead the patient to withdraw, but this does not take their experience with the treatment into account. A list of side effects can be found in the European Association of Urology Nurses guidelines for the intravesical instillation (Vahr et al., 2015). This study which was conducted in a large National Health Service Hospital Trust serving a metropolitan area in the North of England may offer some insight.
The study was undertaken in two parts: firstly a retrospective case note analysis, identifying trends such as symptomology and the ‘natural history’ of BCG treatment. Secondly, a qualitative approach, interviewing patients and identifying themes from the subsequent data analysis.
What is interesting about this study is that it identifies four themes: treatment concerns, withdrawal influencers, unmet needs and treatment bereavement. Participants identified treatment concerns and withdrawal influencers as areas that concerned them most and influenced their decision-making processes.
In more detail, these themes were made up of the following underlying factors:
- Treatment concerns were made up of influencing factors. These affected the quality or experience of the treatment and the attendant processes, such as physical or psychological distress. What supported these themes were dignity, physical effects, side effects and psychological and emotional distress.
- Withdrawal influencers emerged from the factors social impact, experience and effects on daily life. It was found that these factors intertwined to bring the patient to a point of stopping their ‘cancer treatment’.
- Unmet needs derived from communication, choices and the environment that the treatment is delivered in post-treatment.
- Treatment bereavement, this is when patients talked about the loss and feelings experienced following their decision to withdraw from treatment. This highlights their personal journey
and how they thought about their treatment and how they questioned themselves about their decision-making. This is particularly illuminated with the following quote:
“I used to lie in bed and think, “I am not having this
treatment and if that thing starts growing inside me
again, I know they have got rid of it and it might not
come back again but I am not having the treatment
and I needed this treatment and I’m not having it”.
In concluding the study, nursing recommendations were presented such as education, environment, patient support and record keeping. A further recommendation was that healthcare professionals need to work with the patient and their extended support networks in a concerted effort to ensure patients complete their treatment. To read more about this study please see the following articles: Nonmuscle invasive bladder cancer and bacillus Calmette- Guerin treatment: a review of the literature (Alcorn et al., 2014); BCG treatment for bladder cancer, from past to present use (Alcorn et al., 2014); Patterns of patient withdrawal from BCG treatment for bladder cancer: A retrospective time interval analysis (Alcorn et al., 2019); and Withdrawing from treatment for Bladder cancer: Patient experiences of BCG instillations (Alcorn et al. in press).
- Alcorn, J., Burton, R., & Topping, A. (2014). Non-muscle invasive bladder cancer and bacillus Calmette- Guerin treatment: a review of the literature. International Journal of Urological Nursing, 9(2), 57–68.
- Alcorn, J., Burton, R., & Topping, A. (2014). BCG treatment for bladder cancer, from past to present use. International Journal of Urological Nursing, 9(3), 1–10.
- Alcorn, J., Burton, R. L., & Topping, A. E. (2019). Patterns of patient withdrawal from BCG treatment for bladder cancer: A retrospective time interval analysis. International Journal of Urological Nursing, 13(2), 63–74. https://doi.org/10.1111/ ijun.12191
- Alcorn, J., Burton, R. L., & Topping, A. E. (awaiting publication). Withdrawing from treatment for Bladder cancer: Patient experiences of BCG instillations. International Journal of Urological Nursing
- Berry, D., Blumenstein, B., Magyary, D., Lamm, D. & Crawford, E. (1996) Local Toxicity Patterns Associated with Intravesical Bacillus Calmette-Guérin: A Southwest Oncology Group Study. International Journal of Urology, 3 (2) March, pp. 98–100.
- Crispen, R. (1989) History of BCG and Its Substrains. Progress in Clinical and Biological Research, 310, pp. 35–50. Heiner, J. & Terris, M. (2008) Effect of Advanced Age on the Development of Complications from Intravesical Bacillus Calmette-Guérin Therapy. Urologic Oncology, 26 (2), pp. 137–140.
- Lamm, D., Blumenstein, B., Crissman, J., Montie, J., Gottesman, J., Lowe, B., Sarosdy, M., Bohl, R., Grossman, H., Beck, T., Leimert, J. & Crawford, D. (2000) Maintenance Bacillus Calmette-Guerin Immunotherapy for Recurrent TA, T1 and Carcinoma in Situ Transitional Cell Carcinoma of the Bladder: A Randomized Southwest Oncology Group Study. The Journal of Urology, 163 (4), pp. 1124–1129.
- Morales, A., Eidinger, D. & Bruce, A. (1976) Intracavitary Bacillus Calmette-Guerin in the Treatment of Superficial Bladder Tumors. The Journal of Urology, 116 (2), pp. 180–183.
- Orihuela, E., Herr, H., Pinsky, C. & Whitmore, W. (1987) Toxicity of Intravesical BCG and Its Management in Patients with Superficial Bladder Tumors. Cancer, 60 (3), pp. 326–333.
- Tobias, J. & Hochhauser, D. (2010) Cancer and Its Management. 6th ed. Oxford: Wiley-Blackwell.
- Vahr S., De Blok W., Love-Retinger N., Intravesical instillation with mitomycin C or bacillus Calmette-Guérin in non-muscle invasive bladder cancer. European Association of Urology 2015. ISBN: 978-90-79754-76-2.
Dr. Jason Alcorn, FHEA, D. Nurse, Mid Yorkshire Hospitals NHS Trust, Dept. of Urology, Wakefield (GB), firstname.lastname@example.org