title: 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.
abstract: 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.
  
  
  METHODS
  Survey to assess educational needs of patients with kidney cancer and caregivers.
  
  
  METHODS
  Respondents were invited through physician referrals and online sources and included 365 adult patients with kidney cancer and 52 caregivers.
  
  
  METHODS
  Age, geographic region, and cancer stages 1-2 versus 3-4.
  
  
  METHODS
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Memorial Sloan Kettering Cancer Center, Weill School of Medicine, Cornell School of Medicine, New York, NY 10065, USA. russop@mskcc.org
authors.forename: Paul
authors.initials: P
authors.lastname: Russo
authors.forename: Lynda A
authors.initials: LA
authors.lastname: Szczech
authors.forename: Gail S
authors.initials: GS
authors.lastname: Torres
authors.forename: Marilyn D
authors.initials: MD
authors.lastname: Swartz
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers; D003430:Cross-Sectional Studies; D005260:Female; D007722:Health Knowledge, Attitudes, Practice; D006801:Humans; D007680:Kidney Neoplasms / Q000601:surgery*; D008297:Male; D008875:Middle Aged; D020380:Needs Assessment; D009392:Nephrectomy / Q000009:adverse effects / Q000379:methods*; D059351:Organ Sparing Treatments; D010353:Patient Education as Topic; D051436:Renal Insufficiency, Chronic / Q000209:etiology; D012307:Risk Factors