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Moretto P, Jewett MA, Basiuk J, et al. Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs. Can Urol Assoc J. 2014;8(5):190-4doi: 10.5489/cuaj.1907.
Moretto, P., Jewett, M. A., Basiuk, J., Maskens, D., & Canil, C. M. (2014). Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs. Canadian Urological Association journal = Journal de l'Association des urologues du Canada, 8(5), 190-4. https://doi.org/10.5489/cuaj.1907
Moretto, Patricia, et al. "Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs." Canadian Urological Association journal = Journal de l'Association des urologues du Canada vol. 8,5 (2014): 190-4. doi: https://doi.org/10.5489/cuaj.1907
Moretto P, Jewett MA, Basiuk J, Maskens D, Canil CM. Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs. Can Urol Assoc J. 2014 May;8(5):190-4. doi: 10.5489/cuaj.1907. PMID: 25024789; PMCID: PMC4081249.
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Can Urol Assoc J. 2014 May;8(5):190-4. doi: 10.5489/cuaj.1907.

Kidney cancer survivorship survey of urologists and survivors: The gap in perceptions of care, but agreement on needs.

Canadian Urological Association journal = Journal de l'Association des urologues du Canada

Patricia Moretto, Michael A S Jewett, Joan Basiuk, Deborah Maskens, Christina M Canil

Affiliations

  1. Division of Medical Oncology, Department of Medicine, The Ottawa Hospital Cancer Centre, The Ottawa Research Institute and University of Ottawa, Ottawa ON;
  2. Division of Urology, Departments of Surgery and Surgical Oncology, University of Toronto, Princess Margaret Cancer Centre, University Health Network, Toronto ON;
  3. Kidney Cancer Research Network of Canada, Princess Margaret Cancer Centre, Toronto ON;
  4. Kidney Cancer Canada.

PMID: 25024789 PMCID: PMC4081249 DOI: 10.5489/cuaj.1907

Abstract

INTRODUCTION: 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.

CONCLUSION: 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.

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