Background: Lack of healthcare funding, poor infrastructure, and workforce shortages contribute to treatment barriers across Low- and Middle-Income Countries (LMICs), which negatively impact health outcomes of patients with Kidney Cancer (KC). The International Kidney Cancer Coalition (IKCC) and its network have conducted a biennial Global Patient Survey (GPS) since 2018 to assess patient/caregiver experiences on KC burden, diagnosis, and management, to identify unmet needs and country variances, and guide recommendations and actions to close gaps.
 
Objectives: We present 2025 GPS data on knowledge gaps, Shared Decision Making (SDM) disparities, and treatment barriers across LMICs compared to the Rest of the World (ROW).
 
Methods: An IKCC steering committee of patient advocates, medical experts and the Picker Institute designed the 2025 GPS targeting KC patients and caregivers. It was cognitively tested, translated into 16 languages, and hosted online and on paper. Data were independently analysed using cross-tabulations.
 
Results: Between Sept 24 and Nov 15, 2024, 2677 responses were received from patients (n=2049) and carers (n=628) from 46 countries, including the LMICs Brazil (n=48), India (n=106), Mexico (n=131), Nigeria (n=56), and Türkiye (n=131).
Overall, 28.6% of respondents from LMICs had a >3-month period from initial healthcare provider (HCP) consultation to KC diagnosis compared to 18.3% for the ROW, while 41.3% of respondents from LMICs had >2 visits to an HCP before a diagnosis compared to 21.6% for the ROW. Nigeria had the greatest proportion of respondents with a >3-month waiting period (49%) and >2 visits (69%) before diagnosis.
Among LMICs, 42.4% of patients reported they were not involved as much as they wanted to be in SDM compared to 37.1% for the ROW. India (53%) and Mexico (52%) had the greatest proportion of respondents who were not involved as much as they wanted in SDM. Compared to the ROW, fewer respondents from LMICs indicated they did not completely understand their cancer stage (35.0% vs 38.6%), KC subtype (37.6% vs 47.8%), treatment options (33.1% vs 39.1%), treatment recommendations (31.2% vs 35.8%), risk of recurrence (43.1% vs 50.2%), and survival probability (43.4% vs 57.4%).
Respondents from LMICs had more barriers that impacted treatment choices than the ROW (80.3% vs 49.3%), with all respondents from Nigeria reporting barriers. The most common barriers across LMICs compared to the ROW were cost (47.5% vs 17.4%), long wait times for treatment (36.1% vs 18.8%), lack of health insurance/medical coverage (34.2% vs 8.2%), lack of access to the most up-to-date treatments/equipment (25.5% vs 7.8%), and lack of access to treatment centres/prohibitive travel (25.0% vs 7.8%).

Conclusions/Implications: Patients/carers across LMICs experience barriers to treatment that negatively impact health outcomes. Coordinated global efforts are needed to address health disparities for patients with KC across LMICs by improving access to healthcare and treatment, reducing costs, and alleviating logistical challenges.

Mapping the Kidney Cancer Patient Experience Worldwide: the Global Patient Survey 2025.