Bladder cancer is the ninth most common cancer type worldwide and is one of the most challenging cancers to treat (International Agency for Research on Cancer, 2022). Men are more likely than women to survive. In 2023, nearly 17 000 people in Norway were living with bladder cancer (Norwegian Cancer Registry, 2024).
Approximately 75% of newly diagnosed bladder cancer is non-muscle-invasive bladder cancer (NMIBC) (Nayak et al, 2021). Primary treatment is transurethral resection of the bladder tumour (TURBT) (Gontero et al, 2024). Histological results largely determine further treatment. NMIBC carries a good prognosis; however, up to 70% will ultimately develop recurrence (Nayak et al, 2021). In such an event, the cancer may progress to muscle-invasive bladder cancer (MIBC). To facilitate risk assessment in terms of disease recurrence and progression, NMIBC is grouped into low-, intermediate- and high-risk categories. Patients with intermediate-or high-risk disease may be recommended intravesical therapy with bacillus Calmette-Guérin (BCG) (Gontero et al, 2024).
BCG is a live, attenuated strain of Mycobacterium bovis. Since the 1970s, BCG has served as a cornerstone intervention in the setting of NMIBC (Alcorn et al, 2015; Hobbs et al, 2019). Triggering a local immune response in the bladder, it activates natural cancer-killing cells (Hobbs et al, 2019). Side effects such as cystitis, haematuria, urinary frequency, fever and general malaise can be common, but typically resolve spontaneously within 48–72 hours (Koch et al, 2021).
Patients can experience reduced quality of life during the treatment (Siracusano et al, 2018). Moreover, a proportion of patients, which has been reported as between 42% and 90%, ultimately discontinue treatment (Alcorn et al, 2019; Nummi et al, 2019). Side effects can represent a key reason for early withdrawal (Alcorn et al, 2019; Nummi et al, 2019). Patients may also struggle with the fear of side effects, lack of knowledge about their cancer, absence of social support and treatment compliance (Wildeman et al, 2021). These factors can all contribute to early withdrawal.
Nurses administer and oversee BCG treatment. The suspension is delivered into the bladder via an intermittent urinary catheter. The patient is instructed to empty their bladder after 2 hours (Vahr et al, 2015). The course of treatment typically lasts from 1 year to 3 years, during which time patients receive approximately 15–27 instillations (Gontero et al, 2024). Although previous literature has described how the delivery of BCG therapy can be potentially optimalised, this only briefly highlighted that nurses must ensure good clinical assessments prior to the administration of BCG, provide patient education and assist in the management of side effects (Vahr et al, 2015; Alcorn et al, 2020; McConkey and Dowling, 2021). One study also showed that patients experience psychosocial issues that nurses need to address (Wildeman et al, 2021). There exists a need, therefore, to examine the role of the nurse in more detail.
The aim of this study was to explore nurses’ experiences regarding patients receiving BCG treatment and how these could potentially contribute to patients completing their treatment course.
Method
Study design
The study has a qualitative design, involving focus group interviews. The consolidated criteria for reporting qualitative research (COREQ) were followed (Tong et al, 2007).
Ethics
All procedures were conducted in accordance with the Helsinki Declaration. The project was approved by the Norwegian Agency for Shared Services in Education and Research (no.847848). Study participants were given both verbal and written information before providing written consent.
Sample and recruitment
Three focus groups were conducted, with a total of 15 nurse participants with experience of administering BCG, ranging from 10 months to 22 years. Participants were recruited from eight different hospitals in Norway. None withdrew from the study.
Data collection
Data collection took place between June to September 2023. The interviews were conducted at the study participants’ workplace or educational institution. The first author, an oncology nurse with BCG administration experience, led the interviews. An interview guide was established in accordance with Kallio et al (2016), containing four open questions allowing the study participants to speak freely. After three interviews, the empirical material was considered sufficient to answer the research question. The interviews, which lasted between 47 and 70 minutes, were audio recorded and transcribed verbatim within one week of the interviews. The data material was anonymised in order to protect the identity of the study participants.
Data analysis
The data were analysed using reflexive thematic analysis (RTA) developed by Braun and Clarke (2022). RTA consists of six phases and is a method for developing, analysing and interpreting patterns in qualitative data. It involves a systematic process of coding the data material in order to develop themes that illuminate the research question. The analysis was carried out by the first author in collaboration with co-authors.
Findings
The analysis revealed three main themes that provide answers to the aim of the study: relationship and continuity; knowledge and overview; and managing side effects.
Relationship and continuity
It was of great importance that nurses developed a positive relationship with patients. Safety and trust were considered as a foundation in these relationships throughout the treatment process. The groups found that patients generally tolerated the treatment well and were motivated to complete the treatment course when they understood the purpose of the treatment. However, many patients still faced challenges. The trust established by the nurses led to patients feeling confident to open up about how the treatment affected their lives from both physical and emotional perspectives.
‘… After they have seen us a couple of times, they trust us, and then it often comes: “no, this treatment is tough”, or “I have these challenges, both physical and psychological”.’
Ensuring continuity in the treatment course was assessed as an essential factor that contributed to establishing a relationship and to patients successfully completing their treatment. How the distinct groups implemented continuity varied, and not every study participant reported managing to achieve it. Most groups felt there to be a lack of continuity when patients were meeting the urologist for their cancer follow-up appointments. Continuity among the nurses was therefore necessary.
‘I think that continuity is the most important thing for them when it is such a long treatment. That they meet the same person and know who they can contact if they need anything.’
Some groups highlighted challenges in initiating a meaningful conversation if a satisfactory relationship had not been established. The focus was then on practicalities, the BCG treatment procedure, and the groups referred to patient treatment as an ‘assembly line’ where one quickly moved on to the next patient. The nurses found that patients were short in their answers when they were asked questions about how they had been between treatments. To avoid superficial conversations, it was important that patients met the same nurse in the outpatient clinic. This led to a continuous development of the relationship.
‘… I often feel that I get the same patients, and then you can start the conversation from where you left off last time, and you do not always start from scratch.’
Good clinical assessments prior to the administration of BCG are necessary in order to determine whether patients can receive their treatment. The nurses felt more confident in their clinical assessment if they had developed a relationship with the patients; as a result, they found it easier to distinguish between harmless and serious side effects.
‘I think it is easier for the nurse also, because if there is something … you know which doctor to contact and what to look out for and what is not so dangerous.’
Knowledge and overview
The groups emphasised that nurses must facilitate and ensure that patients receive sufficient information about their individual course of treatment. They found it to be quite random as to how much information the patients had received prior to the treatment start. Ensuring that patients were well-informed led to a greater understanding of what they were going through, making them feel respected and safe. It will strengthen patients’ integrity if they acquire knowledge about what they are facing.
‘… We now have 40 minutes in the first patient meeting and are good at filling in the missing links so that the patients are well informed. And it is a prerequisite for them to have a good experience of the treatment, that they know what they can expect from the treatment …’
They highlighted how a treatment schedule, showing the planned treatment times, helped patients to gain an overview. This led to patients being able to adapt their everyday life around the course of treatment. In some cases, lack of knowledge about the treatment led to anxiety and isolation.
‘There are some patients who think they cannot go dancing on Thursdays, or that they cannot go to their grandchildren's birthday party … They can live a normal life, although they must be extra careful about going to the toilet for the first few days. Some patients think that for a long time you should not socialise with others. They need information.’
It was considered important to have well-trained nurses to guide and inform patients about their treatment. The nurses themselves experienced that they had received different training. Several had observed only one to four instillations of BCG, while others reported receiving 3 weeks of training. The content of the training focused largely on the practical aspects of administration: how the procedure was performed, handling of hazardous drugs, and reviewing the patient information leaflets. Some nurses had also received training on the indications for BCG treatment as well as how it worked. They said most of their knowledge was based on experience. Some had discovered the European evidence-based guidelines for intravesical instillations of BCG (Vahr et al, 2015) and expressed frustration that their workplace had not provided information about such guidelines. The nurses called for better training material for health professionals.
‘Some training material would not be bad, that says something about what you should say to patients, not just the one piece of patient information leaflet.’
The nurses wanted a checklist that could be used as a guide to ensure that patients receive required information about their course of treatment.
Managing side effects
The interdisciplinary collaboration with the urologist was of great importance when it came to management of side effects. Nurses did not hesitate to contact the urologist if patients experienced side effects. Nevertheless, the nurses found that they were often depending on consulting the experienced urologists with an extra commitment to the patient group to feel confident that good assessments were made.
‘We have a very big responsibility, I think, and the doctors do not always have time to answer, or someone is more interested in and knows more about it … So, you become somewhat dependent on talking to those who know the most about it.’
They discussed how the same side effects were managed differently, leading to uncertainty about whether patients were receiving the right treatment. They called for more consistency.
‘Now it is very individual if you call a urologist and say that the patient is up every hour at night, then one urologist might prescribe mirabegron [for overactive bladder], and then there is another urologist who has more experience in giving sleeping pills … While a third might think about painkillers. It could have been more standardised …’
Some nurses had experience with a side-effects questionnaire, where patients could inform nurses of side effects in a standardised way. The questionnaire was seen as a potential supplement to ensure that patients had the same assessment of their side effects.
‘… We have talked about a symptom assessment tool, maybe that could be something … Could more easily map the patients’ symptoms and ensure that everyone gets the same mapping.’
It was discussed that a side-effects questionnaire could also contribute to more standardised treatment of side effects.
Discussion
There were three main themes identified in this study, which highlight what nurses perceive as important contributions to patients receiving BCG treatment, as well as to successfully completing their treatment course. These relate to: building and maintaining a relationship with the patient; treatment knowledge; and the importance of managing side effects. Given the lack of similar research into nurse experience with intravesical BCG therapy, our findings can be considered novel and may therefore contribute to shaping future clinical nursing practice and, ultimately, help more patients complete their BCG treatment course.
In this study, the nurses considered the relationship between nurse and patient as a significant foundation of the treatment course. Nurses must be aware of how essential this is and be willing to develop good relationships with patients. Furthermore, findings showed that if the relationship was not established, the conversation between nurse and patient risked becoming superficial, leading to the patients not being confident in opening up. Rutherford et al (2017) conducted semi-structured interviews to explore experiences of patients diagnosed with NMIBC. They described how patients were more satisfied with their treatment if the healthcare personnel were supportive, comforting and genuinely interested in and responsive to their needs. This supports the importance of relational contact. Patients experiencing continuity in their encounters with health professionals are more grateful and satisfied than those who lack this (Rutherford et al, 2017). A named contact person in the treatment schedule is of great value (Garg et al, 2018; Alcorn et al, 2020; McConkey and Dowling, 2021). Findings from this study support this. Nurses perceived that continuity was important for patients.
In this study, nurses found that a systematic and therefore predictable course of treatment was a factor that contributed to completion of treatment. A sense of normality and control over everyday life helps patients to cope with and manage their own illness and avoids unnecessary worry (Alcorn et al, 2020; Mitchell et al, 2020). Ensuring that patients receive adequate information about treatment was rated as very important. Results from a study by Kopenhafer et al (2024) indicate that some patients discontinued BCG treatment due to negative perceptions about the treatment, and other studies also confirm that these patients have a great need for information about BC, the treatment, and potential side effects (Chung et al, 2019; Hobbs et al, 2019; McConkey and Dowling, 2021). Meeting the information needs of patients could therefore be of great importance and might reduce the number of patients who discontinue treatment.
Vahr et al (2015) highlight patient education and how this nursing task aims to give patients and relatives more control over the disease and their treatment. The nurses in this study were not satisfied with the training they had received, and there was lack of theoretical training material intended for health professionals. As a nurse, one must provide compassionate care and professional justifiability; this is the individual's responsibility and is written in the Norwegian nurses’ professional ethical guidelines (Norwegian Nurses Association, 2023). Ensuring professional justifiability involves, among other things, providing patients with sufficient information about diagnosis, medication and side effects. The hospital department must ensure that healthcare personnel are given the training required for the individual to perform their work properly (uder the Specialist Health Care Act [Norway], 1999). A training programme for nurses has been presented by Vahr et al (2015). Nurses who administer BCG are recommended to undergo the training to ensure safe patient care.
In this study, interdisciplinary collaboration with urologists was considered crucial for patients to complete their treatment course. Nurses did not hesitate to contact the urologist if patients experienced side effects that needed medical assessment. However, they found it confusing that management of BCG side effects was not systematic. Previous studies have highlighted how side effects from BCG treatment could be managed (Decaestecker and Oosterlinck, 2015; Koch et al, 2021). One study showed that poor documentation and limited research on side-effect management have resulted in different practice patterns (Koch et al, 2021). European guidelines include recommendations on managing the side effects of BCG treatment (Gontero et al, 2024). Nurses observing a wide range of practice patterns may indicate that these guidelines need more attention from both nurses and urologists. Nevertheless, all patients have individual needs. Each case should therefore be assessed and managed individually to contain a comprehensive treatment plan when managing side effects.
Nurses have a major responsibility in the BCG treatment process, especially since side effects can represent a key reason as to why patients may withdraw early (Hobbs et al, 2019; Nummi et al, 2019). Nurses must assess whether patients are capable of receiving their planned treatment and, if necessary, take action (Vahr et al, 2015). To ensure proper mapping and assessment of side effects, nurses require a suitable and dedicated assessment tool. A questionnaire has been developed, but linguistic validation has not been performed in Norway (Vahr et al, 2015).
There are limitations in this study. The findings represent only the experience of nurses in Norway. The findings may be less generalisable to other countries where the nursing profession is organised differently. However, international studies and European guidelines highlight how essential nurses are in the treatment course and the need for further research into how this service can be optimised further. Therefore, this study may be of relevance beyond Norway. Future studies could focus on strengthening the knowledge of nurses delivering BCG treatment. Developing an international educational programme based on European guidelines could potentially contribute to this. Routine implementation of a questionnaire for identifying BCG side effects would also be of great value. This could be further supported by studies that analyse risk factors for developing side effects, allowing for the early identification of individuals at higher risk. Finally, development of a treatment algorithm for BCG side effects that is endorsed by international guidelines would allow for standardised care.
Conclusion
Establishing a trusting relationship between nurse and patient is essential when delivering BCG treatment, in order to improve their care and improve treatment completion. Knowledge and overview of the treatment allows for it to be predictable for the patient; this is considered important among nurses if patients are to successfully complete their treatment. Side effects must be taken seriously by health professionals. Assessment and management of any side effects, in collaboration with the urologist, is crucial.