Patient-partnered Research: a Key to Investigating Fear of Cancer Recurrence in Patients With Surgically Treated Kidney Cancer (PP-RECURK)
The goal of this observational study is to gather real-world information about Fear of Cancer Recurrence (FCR) following surgery in patients with renal cell carcinoma (RCC) and their partners/spouses by 1) establishing a panel consisting of patients with or without partners/spouses to facilitate patient-partnered research. Furthermore, 2) Through discussions among panel members and researchers identification of the most pertinent topics related to FCR, as well as the optimal timing and methods for collecting that information in the follow-up care after surgery. Finally, to conduct a feasibility and pilot study to investigate the feasibility of the recommendations developed in 1) + 2) and assess FCR in patients with RCC following surgery and their partners/spouses. In phase 1 participants (panel members) will be asked to collaborate with researchers in the development of recommendations for FCR questions, mode of administration and timing in the follow-up care after surgically treated kidney cancer. In phase 2 participants (patients and partners) in follow-up care after surgically treated kidney cancer are asked to answer questions about FCR at specific timepoints defined by panel members and researchers in phase 1.
⁃ Phase 1:
• Single patients diagnosed with Renal Cell Carcinoma (RCC) or patients with RCC being in an intimate relationship with a partner/spouse
• Partner/spouse to patients who fullfil the inclusion criteria
• Patients have undergone surgery due to localized RCC (T1-T2-T3 tumor)
• Time since surgery: 0-120 months
• Danish speaking patients and partners/spouses. Must be able to speak, write and read Danish
• Patients/partners/spouses able to and willing to attend online project meetings or in person at Gødstrup Hospital.
⁃ Phase 2:
• Single patients diagnosed with Renal Cell Carcinoma (RCC) or patients with RCC being in an intimate relationship with a partner/spouse
• Partner/spouse to patients who fullfill the inclusion criteria
• Patients who have undergone surgery due to localized RCC (T1-T2-T3 tumor)
• Danish speaking patients and partners/spouses. Must be able to speak, write and read Danish
• Able to receive digital communication from the hospital
• Informed consent must be signed before answering Fear of Cancer Recurrence questions