PATIENT ATTITUDES TO SHARED DECISION-MAKING AND INNOVATIONS IN MUSCLE INVASIVE BLADDER CANCER: A MULTI-COUNTRY FOCUS GROUP
Author(s)
C. Daniel Mullins, PhD1, Lazar Popovic, PhD2, Hein van Poppel3, Maarten Postma, PhD4, Christopher Wallis, PhD5, Alex Filicevas, BA6, Nimira Alimohamed, PhD7, Igor Tomaškovic, PhD8;
1University of Maryland School of Medicine, School of Pharmacy, Baltimore, MD, USA, 2University of Novi Sad, Novi Sad, Serbia, 3KU Leuven University, Belgium, 4University of Groningen, Groningen, Netherlands, 5University of Toronto, Urology, Toronto, ON, Canada, 6World Bladder Cancer Patient Coalition, Brussels, Belgium, 7University of Calgary, Alberta, AB, Canada, 8Catholic University of Croatia, Zagreb, Croatia
1University of Maryland School of Medicine, School of Pharmacy, Baltimore, MD, USA, 2University of Novi Sad, Novi Sad, Serbia, 3KU Leuven University, Belgium, 4University of Groningen, Groningen, Netherlands, 5University of Toronto, Urology, Toronto, ON, Canada, 6World Bladder Cancer Patient Coalition, Brussels, Belgium, 7University of Calgary, Alberta, AB, Canada, 8Catholic University of Croatia, Zagreb, Croatia
OBJECTIVES: Treatment for muscle invasive bladder cancer (MIBC) involves complex decisions which impact survival and quality of life, yet patients frequently report limited information and few opportunities for shared decision-making (SDM). This study explored patient attitudes toward SDM and treatment options in Europe and North America to understand patient-perceived value of innovative therapies and the need to strengthen SDM.
METHODS: A 2-hour focus group discussion was conducted with those with MIBC and patient advocacy representatives from Canada (n=1), Italy (n=1), the Netherlands (n=1), the United Kingdom (n=1) and the United States (n=3). Participants included those diagnosed with MIBC or represented a patient advocacy organisation. A semi-structured discussion guide explored decision-making, perceptions of value and experiences navigating care pathways. The transcript was analysed using inductive and deductive coding to identify key themes.
RESULTS: Four themes emerged: 1. Access to multidisciplinary teams. Limited availability of multidisciplinary teams constrained SDM discussions and patient confidence in treatment choices. 2. Access to treatment options. Participants reported barriers related to waiting times, eligibility criteria, and cost. Patients expressed a desire for better communication of the value of innovative treatments to support equitable access. 3. Health-related quality-of-life (HRQoL). HRQoL was prioritised alongside survival, with emphasis on reducing treatment side effects, recurrence risk, and financial burden. 4. Limited treatment literacy. Inadequate understanding of available options hindered meaningful participation in SDM.
CONCLUSIONS: When making informed care decisions, MIBC patient attitudes are shaped by a combination of health literacy, HRQoL expectations and access barriers. These findings highlight the importance of ensuring that patient attitudes to innovations in MIBC are well understood and that systems are ready to enable shared decision making. Though the small sample and single focus group format limits generalisability, the findings are useful for identifying themes that can guide future patient preference research.
METHODS: A 2-hour focus group discussion was conducted with those with MIBC and patient advocacy representatives from Canada (n=1), Italy (n=1), the Netherlands (n=1), the United Kingdom (n=1) and the United States (n=3). Participants included those diagnosed with MIBC or represented a patient advocacy organisation. A semi-structured discussion guide explored decision-making, perceptions of value and experiences navigating care pathways. The transcript was analysed using inductive and deductive coding to identify key themes.
RESULTS: Four themes emerged: 1. Access to multidisciplinary teams. Limited availability of multidisciplinary teams constrained SDM discussions and patient confidence in treatment choices. 2. Access to treatment options. Participants reported barriers related to waiting times, eligibility criteria, and cost. Patients expressed a desire for better communication of the value of innovative treatments to support equitable access. 3. Health-related quality-of-life (HRQoL). HRQoL was prioritised alongside survival, with emphasis on reducing treatment side effects, recurrence risk, and financial burden. 4. Limited treatment literacy. Inadequate understanding of available options hindered meaningful participation in SDM.
CONCLUSIONS: When making informed care decisions, MIBC patient attitudes are shaped by a combination of health literacy, HRQoL expectations and access barriers. These findings highlight the importance of ensuring that patient attitudes to innovations in MIBC are well understood and that systems are ready to enable shared decision making. Though the small sample and single focus group format limits generalisability, the findings are useful for identifying themes that can guide future patient preference research.
Conference/Value in Health Info
2026-05, ISPOR 2026, Philadelphia, PA, USA
Value in Health, Volume 29, Issue S6
Code
PCR135
Topic
Patient-Centered Research
Disease
No Additional Disease & Conditions/Specialized Treatment Areas, SDC: Oncology