Patient and Caregiver Knowledge and Utilization of Partial Versus Radical Nephrectomy: Results of a National Kidney Foundation Survey to Assess Educational Needs of Kidney Cancer Patients and Caregivers

Background In response to requests from patients, caregivers, and physicians for information on kidney cancer, the National Kidney Foundation (NKF) conducted a survey to assess the educational needs of the kidney cancer community. Key areas of assessment were patient and caregiver knowledge of risk factors for chronic kidney disease (CKD), including kidney cancer and nephrectomy, and of kidney-sparing surgical options. Study Design Survey to assess educational needs of patients with kidney cancer and caregivers. Setting & Participants Respondents were invited through physician referrals and online sources and included 365 adult patients with kidney cancer and 52 caregivers. Predictor Age, geographic region, and cancer stages 1-2 versus 3-4. Outcomes & Measurements Survey responses were descriptively analyzed, with data compared and weighted to the population age and geographic characteristics of the general kidney cancer population. Results 83% of 181 early-stage patients, 92% of 123 late-stage patients, and 86% of 113 patients who did not know their stage received radical nephrectomy. Although 62% agreed that radical nephrectomy for cancer treatment is a risk factor for CKD, only 40% agreed that losing part or all of 1 kidney from injury or a disease other than cancer is a risk factor for CKD. 56% agreed that kidney cancer can be related to CKD. Limitations We did not have patient medical records to validate responses and we do not know the number of people who were invited to take the survey but declined. Conclusions There is a lack of patient awareness that kidney cancer and radical nephrectomy are risk factors for CKD. Only a minority of patients underwent partial nephrectomy or were given it as an option for their early-stage kidney cancer. This suggests a knowledge deficit among physicians, surgeons, patients, and caregivers alike that there is a bidirectional relationship between kidney cancer and CKD and that kidney-sparing surgery is preferable when feasible.