A Mixed-Methods Study of the Unmet Needs and Burdens of Illness of Patients With Bladder Cancer in France

OBJECTIVES: Bladder cancer is one of the top 10 most commonly diagnosed cancers worldwide. It is divided into non-muscle-invasive (NMIBC) and muscle-invasive (MIBC). The mortality rate in France is one of the highest in Western Europe, and patients experience significant burdens due to the high recurrence rates and limited treatment options, especially for NMIBC, for which systemic immunotherapies are being studied. Despite accounting for one of the highest lifetime costs of all cancers, it receives low research funding, and significant gaps in knowledge remain.

METHODS: A mixed-methods approach was employed, through a patient survey and interviews with physicians. A total of 81 patients answered the questionnaire and 7 physicians (4 oncologists and 3 urologists) were interviewed. The qualitative data was analyzed using ATLAS.ti, while for the quantitative data, descriptive analysis was performed in Excel and statistical analysis in R.

RESULTS: In practice, NMIBC patients are only seen by urologists, often in private clinics, while MIBC patients are treated by both oncologists and urologists. NMIBC patients thus receive fewer supportive resources, and their needs are under-considered. One of the biggest unmet needs identified was receiving complete and comprehensible information. It was found to be a statistically significant predictor of the satisfaction with the management of the disease (OR=7.88), satisfaction with the resources received (OR=8.15), as well as levels of implication in care decisions (OR=8.07). In terms of how the organization of care should change to better meet these needs, especially in the face of the potential new NMIBC treatments, no consensus could be reached, but oncologists’ involvement seems likely necessary, due to urologists’ lack of experience with such therapies.

CONCLUSIONS: Evidence-backed policies need to be implemented to address the current organizational challenges and ensure NMIBC patients have appropriate access to supportive care. In addition, an in-depth review of the informative resources patients receive is necessary.