Intravesical instillation with mitomycin C and bacillus Calmette-Guérin in non-muscle-invasive bladder cancer (2026)

13. Patient experience

Positive patient experiences are associated with patient safety, health outcomes and clinical effectiveness. To be able to understand the nurse’s role, a mutual understanding of the concept is necessary.

Patient-Reported Experience Measures focus on the patient’s overall experience of their healthcare, including their opinions about the care they have received and their perceptions regarding the impact of treatment. Patient experience can be measured as both objective events such as handling out written information about a procedure, or subjective evaluative measures about patient involvement in decisions on treatment [165]. Factors explaining and influencing the association between received care and patient-reported experience have been identified in a review, which found that patient-related factors such as expectations, age, health status and education influenced patient experience of received care. This means that some influencing factors are predefined and established before entering the healthcare system (sociodemographic background and certain expectations) and some influencing factors are formed in the meeting with the healthcare system [165].

Eight studies addressing patient experience with intravesical instillations were identified and the following items were described:

Treatment burden
In a study involving 150 patients, 55% of patients experienced time burden relating to BCG administration [151]. Similarly, treatment burden such as missed work, personal costs, having to bring a relative and the ability to perform regular daily work was also described in another study involving 233 patients undergoing BCG treatment [166]. In addition, a third study also identified issues related to delays returning to work or getting back to pre-treatment levels of activity [167].

Continuity of care
In an interview study of 26 patients, patients having different nurses experienced negative emotions, while those who had the same nurse, reported greater satisfaction. The study also described embarrassment due to lack of continuity in care [167]. An interview study with six patients that explored how patients experience influenced withdrawal from BCG treatment found that dignity in treatment was important and that continuity in care helped maintain patients’ dignity [168].

Unmet needs
A study involving 586 patients with both MIBC and NMIBC found that 51% had unmet needs [169]. Interestingly, very small differences were found between groups in unmet needs. The most frequent unmet needs were:

• general information about cancer
• possible side effects to treatment
• how to manage side effects
• treatment advantages/disadvantages
• information on what symptoms to monitor and report in future [168, 169].

Treatment concerns/symptom impact

A small study investigated nocturia and insomnia in ten patients undergoing BCG treatment. The study found that 6/10 experienced nocturia and subsequently sleep disturbances. However, sleep quality restored to baseline in 5/6 patients one month after the end of treatment [170].

A prospective study with 108 patients investigated anxiety using the STAI-Y1 (State-Trait Anxiety Inventory for Adults) validated tool and found a moderate degree of anxiety in patients undergoing intravesical instillations at baseline and at three months, but after twelve months, anxiety scores had improved [157]. A major concern for patients having epirubicin or BCG seemed to be the procedure itself (i.e. waiting, urethral catheterisation, instillation, LUTS and so on) and not recurrence or disease progress [157].

Another interview study found that poor post-treatment care raised concern, particularly regarding unaddressed side effects. This study found that patients who withdraw from treatment felt treatment bereavement because they were unable to fulfil the planned BCG instillations [168].