9. PATIENT REPORTED OUTCOME MEASURES AND QUALITY INDICATORS FOR NMIBC
9.1. PROMS and PREMS in NMIBC
As NMIBC is associated with a significant number of hospital visits and interventions (TURBT, re-TURBT, surveillance cystoscopy, intravesical instillations) survivorship has a significant effect on patient QoL [440,441]. Several Patient Reported Outcome Measures (PROMs) and Patient Reported Experience Measures (PREMs) have been developed to gauge the impact of treatment and surveillance on patients with a view to improving quality of care; however, due to lack of standardisation and heterogeneity none of them can currently be recommended for use in clinical practice [442]. Regardless, in order to provide the best possible care, clinicians should always be cognisant of the impact of disease and treatment (including surveillance) on their patients’ QoL. The use of PROMs is an important endpoint for quality metrics and RCTs should systematically incorporate PROs for patient-centred research design.
9.2. Quality Indicators (QI) in Bladder Cancer
Evidence based Quality Indicators (QIs) and Quality Performance Indicators (QPIs) are designed to be surrogates of good practice and consequently, outcomes. They allow for the gap between efficacy and effectiveness to be narrowed, i.e. being able to bring research evidence and guideline recommendations into real world practice by improving compliance to them [443]. They also permit objective monitoring of the quality of care and thus facilitate quality control as well as service and process improvements.
Several QIs for bladder cancer have been suggested [444-447]. The table below represents the general and NMIBC related QIs adapted from Leow et al., [446] and the Scottish Quality Performance Indicator (QPI) programme [447]. Quality indicators and QPIs should be SMART (Specific, Measurable, Achievable, Relevant, Trainable) [443]. Scotland introduced such a programme for Bladder Cancer in 2014 [447], and have been an exemplar by being able to demonstrate high levels of compliance to QPIs while reducing practice variation across country whilst also demonstrating the clinical value of such a programme [161], including development of prognostic models [426].
Successful implementation of a QI programme has the potential to inspire and catalyse clinical excellence in contemporary Bladder Cancer practice [443].
Table 9.1: Quality Indicators for general aspects of bladder cancer and NMIBC care adapted from [446, 447]
Quality Indicators for general aspects of bladder cancer and NMIBC care adapted from | |
General aspects of bladder cancer care | Recommended Quality Indicators |
Appropriate imaging for patients newly diagnosed with bladder cancer | Newly diagnosed bladder cancer patients who have cross-sectional imaging of upper urinary tract (eg, CT, MRI, or US) - as recommended in section 5.4 |
Participation in clinical trials | Availability of clinical trials to bladder cancer patients who are treated at a particular health care facility. |
Aspects of NMIBC care | Recommended Quality Indicators |
Pre-operative: | |
Counselling | At the time of diagnosis, patients should be counselled to discontinue tobacco smoking. |
Intra-operative: | |
Tumour/patient history | Use of an Intra-operative checklist (as recommended in Table 5.1) |
Conduct of TURBT | Patients with muscle present in specimen from initial TURBT (excluding TaLG disease). |
Use of a Bladder Diagram (as per Figure 5.1) | |
Re-staging TURBT | Restaging TURBT should be performed within 2–6 wk of the initial TURBT and include resection of the primary tumour site as per recommendations in section 5.13. |
Post-operative: | |
Risk stratification and surveillance counselling for patients with NMIBC | Use the EAU 2021 Risk Stratification for progression and the 2006 EORTC scoring model for recurrence to counsel patients with NMIBC on treatment and surveillance. |
Intravesical therapy | Patients who received immediate post-TURBT instillation of intravesical chemotherapy, excluding those with contraindications (eg, incomplete resection, suspected perforation, significant haematuria). |
Intermediate- and high-risk NMIBC patients who were counselled and subsequently initiated adjuvant intravesical chemotherapy or BCG, respectively. | |
Multidisciplinary Team management | Patients with high risk and very high risk NMIBC should be discussed in a multi-disciplinary meeting to ensure comprehensive review and options. |
Appropriate frequency of surveillance based on stage/grade of bladder cancer | Appropriate intervals between cystoscopic surveillance as per Table 8.2. |
Appropriate assessment of the upper urinary tract in high-risk patients. | |