Emotional concerns due to kidney cancer (KC) and disparities in patient support across North America (NA): Results from the International Kidney Cancer Coalition (IKCC) global patient survey (GPS).

Abstract

490 Background: Patient support services are an important component of care for people with KC that can lead to better outcomes, improved emotional wellbeing, and a higher quality of life. The IKCC and its network have conducted a biennial 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. We present 2025 GPS data on emotional wellbeing and patient support resources across NA compared to global responses. 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 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, including Canada (n = 266), the USA (n = 220), and Mexico (n = 131). In the last 12 months, 85% of respondents globally experienced an impact to their emotional wellbeing due to KC or kidney growth. Emotional concerns were observed across all stages of disease. The most common were disease-related anxiety (50%), fear of recurrence (49%), sadness/depression (36%), fear of dying (35%), and difficulty in daily living, on the job or in school (23%). Globally, only 45%–66% of respondents discussed these emotional concerns with an HCP, and 12%–20% of conversations were reported as unhelpful. Variations were observed across countries in NA; notably, more respondents from Mexico discussed emotional concerns with an HCP compared to Canada and the USA. Globally, 50% of respondents accessed a patient support group, either in person or online, with variations across NA. Overall, 47% said they were helpful, 3% said they were not helpful, 31% did not need a patient support group, and 16% could not find one. Patient organization websites (28%) and online support groups (27%) were considered most helpful, with variations observed across NA. Respondents indicated a desire for more counselling and/or psychological support, in-person support, peer-to-peer support, and online support. Conclusions: Most respondents in NA experienced an impact to their emotional wellbeing due to KC; however, many did not use a patient support group or discuss their emotional concerns with an HCP, particularly in Canada and the USA. Improved communication is needed between patients/caregivers and HCPs to address emotional concerns. Referrals to trusted patient support groups can reduce existing gaps in emotional support services, particularly with in-person support groups and counselling/psychological support.