U-CHANGE Project: a multidimensional consensus on how clinicians, patients and caregivers may approach together the new urothelial cancer scenario.

Introduction: Advanced urothelial carcinoma remains aggressive and very hard to cure, while new treatments will pose a challenge for clinicians and healthcare funding policymakers alike. The U-CHANGE Project aimed to redesign the current model of care for advanced urothelial carcinoma patients to identify limitations ("as is" scenario) and recommend future actions ("to be" scenario). Methods: Twenty-three subject-matter experts, divided into three groups, analyzed the two scenarios as part of a multidimensional consensus process, developing statements for specific domains of the disease, and a simplified Delphi methodology was used to establish consensus among the experts. Results: Recommended actions included increasing awareness of the disease, increased training of healthcare professionals, improvement of screening strategies and care pathways, increased support for patients and caregivers and relevant recommendations from molecular tumor boards when comprehensive genomic profiling has to be provided for appropriate patient selection to ad hoc targeted therapies. Discussion: While the innovative new targeted agents have the potential to significantly alter the clinical approach to this highly aggressive disease, the U-CHANGE Project experience shows that the use of these new agents will require a radical shift in the entire model of care, implementing sustainable changes which anticipate the benefits of future treatments, capable of targeting the right patient with the right agent at different stages of the disease.

Epidemiology and unmet needs of bladder cancer in Italy: a critical review.

Bladder cancer is one of the most frequent cancers in high-income countries. Information on bladder cancer in Italy is scattered across scientific literature and institutional and educational resources and no attempt has been made yet to organize and summarize this information across various sources of available data. We, therefore, present herein a critical literature review of recent epidemiological and healthcare data, including patients' unmet needs. We undertook a critical review of the scientific and grey literature by exploring several different databases and search browsers. Available official statistics indicate a high burden of bladder cancer in Italy, where this neoplasm has one of the highest incidences worldwide and, in consideration of its relatively high survival, it ranks 4th in cancer prevalence. The limited therapeutic options for muscle-invasive and advanced/metastatic urothelial cancer are one of the major unmet needs for patients with this neoplasm, in Italy and worldwide. Advances in cancer immunotherapy and in understanding molecular biology of bladder cancer are, however, rapidly altering the therapeutic landscape for targeted subgroups of patients with advanced/metastatic disease. Other unmet needs include the low quality of life after radical cystectomy, the lack of widespread clinical pathway schemes to improve and standardize the quality of care and low Italian patients empowerment. Bladder cancer represents a health burden in Italy, with high incidence and prevalence rates, and important unmet needs for patients, including the limited therapeutic options for advanced/metastatic cancers, the low quality of life after radical cystectomy, the lack of widespread clinical pathway schemes, and the low patients empowerment.

Bladder Cancer Patient Advocacy: A Global Perspective.

Over the past 20 years, cancer patient advocacy groups have demonstrated that patient engagement in cancer care is essential to improving patient quality of life and outcomes. Bladder cancer patient advocacy only began 10 years ago in the United States, but is now expanding around the globe with non-profit organizations established in Canada, the United Kingdom and Italy, and efforts underway in Australia. These organizations, at different levels of maturity, are raising awareness of bladder cancer and providing essential information and resources to bladder cancer patients and their families. The patient advocacy organizations are also helping to advance research efforts by funding research proposals and facilitating research collaborations. Strong partnerships between these patient advocates and the bladder cancer medical community are essential to ensuringsustainability for these advocacy organizations, increasing funding to support advances in bladder cancer treatment, and improving patient outcomes.