title: Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs.
abstract: BACKGROUND
  There is lack of evidence-based literature addressing comprehensive long-term care for kidney cancer (KC) survivors. Additionally, it is unclear if the concerns of KC patients/caregivers are being adequately addressed. Therefore, Kidney Cancer Canada, a patient-led support organization for Canadians with KC, commissioned this first recorded survivorship survey specific to KC patients/caregivers.
  
  
  METHODS
  We conducted a cross-sectional online survey of Canadian patients/caregivers diagnosed with localized KC, and a separate parallel survey of Canadian urologists. The primary objectives were to assess patient/caregivers' and urologists' perceptions of information provided, as well as the physical/psychological/emotional impact of KC treatment.
  
  
  RESULTS
  Urologists recalled providing information about surgical complications (90%) and their management (63%), while patients/caregiver recalled much less (33% and 35%). Of the urologists, 93% recalled providing information on cancer recurrence, but only 42% of patients/caregivers remembered receiving this information. Concerns identified by patients/caregivers and urologists were similar: fear of recurrence, concerns about cancer, fatigue, and anxiety. Importantly, all agreed that survivorship information was paramount. Education of both patients/caregivers and physicians and the development of guidelines were factors identified to ensure optimal KC survivorship. Study limitations include potential biases in recall and selection of participants.
  
  
  CONCLUSIONS
  There was some discordance between urologists' and patients/caregivers' rates of recall of information provided. Patients/caregivers would have desired more information about their cancer, long-term follow-up, and potential complications. A survivorship care plan (SCP) tailored to KC may be an effective measure to address these needs. The impact of this SCP on survivor outcomes should be rigorously assessed.
authors.affiliation: Division of Medical Oncology, Department of Medicine, The Ottawa Hospital Cancer Centre, The Ottawa Research Institute and University of Ottawa, Ottawa ON;
authors.forename: Patricia
authors.initials: P
authors.lastname: Moretto
authors.affiliation: Division of Urology, Departments of Surgery and Surgical Oncology, University of Toronto, Princess Margaret Cancer Centre, University Health Network, Toronto ON;
authors.forename: Michael A S
authors.initials: MA
authors.lastname: Jewett
authors.affiliation: Kidney Cancer Research Network of Canada, Princess Margaret Cancer Centre, Toronto ON;
authors.forename: Joan
authors.initials: J
authors.lastname: Basiuk
authors.affiliation: Kidney Cancer Canada.
authors.forename: Deborah
authors.initials: D
authors.lastname: Maskens
authors.affiliation: Division of Medical Oncology, Department of Medicine, The Ottawa Hospital Cancer Centre, The Ottawa Research Institute and University of Ottawa, Ottawa ON;
authors.forename: Christina M
authors.initials: CM
authors.lastname: Canil