Session report: Patient experience with BCG1 instillation and ‘loneliness’ in long term BCa treatments
Positive patient experiences are associated with patient safety, health outcomes and clinical effectiveness and they can improve compliance with the treatment regimen, ensuring patients complete the necessary course of therapy. By focusing on these areas, health care workers (HCW) can help patients navigate their treatment journey more comfortably and maintain a better quality of life. Likewise, studies have shown that patients who have positive experiences and feel supported are more likely to adhere to treatment plans, which can lead to better clinical outcomes.
Patient Reported Experience Measures (PREMS)
PREMS focus on the patient’s overall experience of their healthcare, including their opinions about the care they have received and their perceptions about the impact of treatment. Patient experience can be measured as both objective events such as handling out written information about BCG or subjective evaluative measures about patient involvement in decisions on treatment of side-effects. 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 health care system (sociodemographic background and certain expectations) and some influencing factors are formed in the meeting with the health care system.
Findings of patients experience with BCG instillations
Eight studies addressing patient experience with intravesical instillations were identified in a literature search and they found that 55 % of patients undergoing BCG treatment experienced time burden. Another study found that treatment burden such as missed work, personal costs, having to bring a relative and difficulty with daily activities was experienced by patients and treatment burden can affect mental health as shown in the Facing Bladder cancer report “Insights from patients and caregivers” from 2022. Delays in returning to work or pre-treatment activity levels were also noted. Patients with continuity in nursing care reported greater satisfaction and dignity, while those with different nurses experienced negative emotions. Continuity in care was important for maintaining dignity and influencing treatment continuation.
51% of patients in a study enrolling 586 patients had unmet needs, including lack of general information about the treatment pathway, managing side effects, treatment advantages/disadvantages, and symptoms to monitor. These needs were comparable to those experienced by patients with muscle invasive bladder cancer.
Nocturia and insomnia affected 6 out of 10 patients in a small study of 26 patients, but sleep quality improved for most after treatment. Moderate anxiety was common initially but improved after twelve months. A major concern for patients undergoing epirubicin or BCG treatment included the procedure itself rather than disease progression. Poor post-treatment care raised concerns about unaddressed side effects, leading some patients to withdraw from treatment, pointing to the importance of supportive care and positive interactions with HCW which may help alleviate these feelings and thus contribute to better overall mental health.
Loneliness in long-term bladder cancer treatment
Experiencing side-effects affects patients’ overall well-being and ability to function, but psychological well-being is influenced to a great extent by factors such as patient’s experience of care. The impact of experiencing side-effects and treatment burden on mental health has been confirmed in a cohort study with 65,846 patients (Private insurance and Medicare compared to controls) and they found that 6-7% of bladder cancer patients vs 3.4 % of healthy controls developed new on-set depression or anxiety 6 months after bladder cancer diagnosis. Likewise, the risk of suicide is twice the risk compared to those without bladder cancer. The risk is particularly higher in patients aged 70 or older, those who are unmarried, and those with cancer that has spread regionally. These findings emphasize the importance of mental health support for individuals diagnosed with bladder cancer.
Conclusion
BCG treatment for bladder cancer presents significant burdens, including time constraints, missed work, and difficulty with daily activities. Continuity of care is crucial for patient satisfaction and dignity, with consistent nursing care leading to better emotional outcomes. Despite these challenges, unmet needs such as cancer information and managing side effects remain prevalent. Anxiety and feelings of loneliness are common but tend to decrease over time. Addressing these concerns and improving post-treatment care can enhance patient experiences and support treatment adherence.
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Author: Ms. Susanne Vahr Lauridsen, PhD, RN, Senior Researcher, Copenhagen (DK)