Emotional health concerns due to kidney cancer (KC) and unmet needs in patient support: Results from the International Kidney Cancer Coalition (IKCC) Global Patient Survey (GPS).

Abstract

4532 Background: KC negatively impacts the emotional well-being of patients, and patient support services are a critical component of care to improve emotional health and patient outcomes. Since 2018, the IKCC and its network have conducted a biennial GPS to assess patient/caregiver experiences on KC burden, diagnosis, and management, determine unmet needs and country variances, and identify opportunities to close gaps. We present global data from the 2025 GPS on emotional well-being and use of patient support resources. Methods: An IKCC steering committee of patient advocates, medical experts and the Picker Institute (UK) 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 analyzed using cross-tabulations. Results: Between Sept 24 and Nov 15, 2024, 2677 responses were received from patients (n=2049) and caregivers (n=628) from 46 countries. Globally, 85% of respondents were impacted emotionally due to KC, with impacts observed across all disease stages. The most common were disease-related anxiety (50%), fear of recurrence (49%), sadness/depression (36%), and fear of dying (35%). Respondents aged 80+ and 66–80 years reported fewer emotional concerns than younger respondents. Globally, only 40%–66% of respondents discussed emotional concerns with a healthcare provider (HCP). Respondents from India and Mexico were more likely to discuss concerns with an HCP, while those from the Republic of Korea were least likely to discuss concerns. Many conversations with HCPs were considered unhelpful; notably, 33% indicated discussions about difficulties navigating the healthcare system were unhelpful. Globally, 50% of respondents accessed a patient support group, either in person or online. Respondents from Japan (19%), Türkiye (24%), France (25%), and Italy (27%) were least likely to access a patient support group, while those from India (90%) and the Republic of Korea (88%) were most likely to access a group. Overall, 47% said support groups were helpful. Patient organization websites (28%) and online support groups (27%) were considered most helpful, with variations observed across countries. Respondents indicated a desire for more counselling and/or psychological support, in-person support, peer-to-peer support, and online support. Conclusions: Most respondents experienced an impact on their emotional well-being due to KC; however, many did not discuss their emotional concerns with an HCP or access a patient support group either in person or online. Improved communication is needed between patients/caregivers and HCPs to address emotional concerns. HCPs can improve patient well-being through referrals to counselling/psychological support, and patient organizations in their country.