Abstract
BackgroundDespite the embedding of bladder cancer management in European guidelines, large variation in clinical practice exists for applied diagnostics and treatments. This variation may affect patients’ outcomes including complications, disease recurrence, progression, survival, and health-related quality of life (HRQL). Lack of detailed clinical data and HRQL data hampers a comprehensive evaluation of bladder cancer care. Through prospective data registration, this study aims to provide insight in bladder cancer care in the Netherlands and to identify barriers and modulators of optimal bladder cancer care.MethodsThis study is a nationwide prospective cohort study including all patients who were newly diagnosed with high-risk non-muscle invasive bladder cancer (HR-NMIBC; Tis and/or T1, N0, M0/x) or non-metastatic muscle invasive bladder cancer (MIBC; ≥T2, N0/x-3, M0/x) in the Netherlands between November 1st 2017 and October 31st 2019. Extensive data on patient- and tumor characteristics, diagnostics, treatment and follow-up up to 2 years after diagnosis will be collected prospectively from electronic health records in the participating hospitals by data managers of the Netherlands Cancer Registry (NCR). Additionally, patients will be requested to participate in a HRQL survey shortly after diagnosis and subsequently at 6, 12 and 24 months. The HRQL survey includes six standardized questionnaires, e.g. SCQ Comorbidity score, EQ-5D-5 L, EORTC-QLQ-C30, EORTC-QLQ-BLM30, EORTC-QLQ-NMIBC24 and BCI. Variation in care and deviation from the European guidelines will be assessed through descriptive analyses and multivariable multilevel analyses. Survival analyses will be used to assess the association between variation in care and relevant outcomes such as survival.DiscussionThe results of this observational study will guide modifications of clinical practice and/or adaptation of guidelines and may set the agenda for new specific research questions in the management of bladder cancer.Trial registrationRetrospectively registered in the Netherlands Trial Register. Trial identification number: NL8106. Registered on October 22nd 2019.
Highlights
Despite the embedding of bladder cancer management in European guidelines, large variation in clinical practice exists for applied diagnostics and treatments
Previous research showed that the chance of undergoing curative treatment or a cystectomy, i.e. the most delivered and recommended curative treatment in the Netherlands [4], in patients with muscle invasive bladder cancer did depend on patient and tumor characteristics, such as age and disease stage [5–8]
Our study is situated in the Netherlands, we expect that our conclusions will be relevant for other countries as well
Summary
Despite the embedding of bladder cancer management in European guidelines, large variation in clinical practice exists for applied diagnostics and treatments. This variation may affect patients’ outcomes including complications, disease recurrence, progression, survival, and health-related quality of life (HRQL). Only a few aspects of bladder cancer care can be evaluated: lack of detailed clinical data is hindering steps to carefully assess between-hospital practice variation. There is limited insight in the barriers and modulators that providers, such as treating physicians and hospitals, face in delivering optimal care More insight in such factors is warranted to improve care for patients with bladder cancer [9]
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