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

Authors

  • Patricia Moretto The Ottawa Hospital
  • Michael A.S. Jewett Division of Urology, Departments of Surgery and Surgical Oncology, University of Toronto, Princess Margaret Cancer Centre, University Health Network, 610 University Avenue, Toronto ON, CANADA M5G 2M9
  • Joan Basiuk Project Manager, Kidney Cancer Research Network of Canada, Princess Margaret Cancer Centre, 610 University Avenue, Toronto ON, CANADA M5G 2M9
  • Deborah Maskens Director of Medical Relations and Co-founder, Kidney Cancer Canada: www.kidneycancercanada.ca
  • Christina Maria Canil Division of Medical Oncology, Department of Medicine, The Ottawa Hospital Cancer Centre, The Ottawa Research Institute and University of Ottawa, 501 Smyth Road, Ottawa ON, CANADA K1H 8L6

DOI:

https://doi.org/10.5489/cuaj.1907

Keywords:

kidney cancer, survivorship, patients, caregivers, urologists, perceptions, nephrectomy

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 (KCC), a patient-led support organization for Canadians diagnosed with KC, commissioned this first recorded survivorship survey specific to patients/caregivers diagnosed with localized KC.

Methods: A cross-sectional on-line survey for Canadian patients/caregivers with non-metastatic KC at diagnosis, and a separate parallel survey of Canadian urologists were performed. The primary objective was 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 recall was much less (33% and 35% respectively). Ninety-three percent of urologists recalled providing information on cancer recurrence, but only 42% of patients/caregivers remembered receiving this information. The 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 important. Education of both patients/caregivers and physicians and the development of guidelines were factors identified to ensure optimal KC survivorship.

Discussion/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. Provision of a survivorship care plan tailored to KC may be an effective measure to address these needs. The impact of such an intervention on the survivor outcomes should be rigorously assessed.

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Published

2014-06-16

How to Cite

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, 8(5-6), 190–4. https://doi.org/10.5489/cuaj.1907

Issue

Vol. 8 No. 5-6 (2014): CUAJ June

Section

Original Research

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