Knowledge of genetic testing for hereditary kidney cancer in Canada is lacking: The results of the Canadian national hereditary kidney cancer needs assessment survey

Authors

  • Philippe Denis Violette Western university
  • Suzanne Kamel-Reid University Health Network University of Toronto
  • Gail E Graham Children's Hospital of Eastern Ontario and the University of Ottawa
  • M Neil Reaume The Ottawa Hospital Cancer Centre and the University of Ottawa
  • Michael A Jewett Princess Margaret Hospital, University Health Network, University of Toronto
  • Melanie Care University Health Network
  • Joan Basiuk Kidney Cancer Research Network of Canada
  • Stephen E Pautler Western University

DOI:

https://doi.org/10.5489/cuaj.2415

Keywords:

Genetics, Surgery, Molecular medicine, Nephrology, Oncology, Urology

Abstract

Introduction: Treatment of hereditary renal cell carcinoma (HRCC) requires a multidisciplinary approach that may involve medical oncologists, geneticists, genetic counsellors, and urologists. The objective of our survey was to obtain current and representative information about the use and perceived importance of genetic testing for HRCC in Canada.

Methods: A self-administered web-based survey was provided to Canadian medical oncologists, geneticists, genetic counsellors, and urologists in collaboration with their respective associations. The survey was created through an iterative process in consultation with the Kidney Cancer Research Network of Canada and contained both quantitative and qualitative components. The survey was designed to be exploratory and results were compared across regions.

Results: The overall response was low (6.6%). Of the respondents, 42%, 33%, 19%, 5% were genetic counsellors, urologists, medical oncologists and medical geneticists, respectively. Of the respondents, 62.7% described their practice as academic, and 37.3% described it as non-academic. Non-academic respondents tended to refer for genetic counselling less frequently than academic (48.6% vs. 67.2%). Most respondents believed that genetic testing for HRCC was available (82.8%), although 47.7% did not know which tests were available. This observation was consistent across provinces. Testing for Von Hippel-Lindau syndrome was given the highest priority among respondents. Limited provider knowledge, clinical guidelines, institutional funding, access, and poor coordination between disciplines were cited as barriers to testing.

Interpretation: There is a need to increase provider knowledge of genetic testing for HRCC. These findings support the development of practice guidelines and national strategies to improve coordination of specialists and access to genetics services. Limitations of the present study include low survey response which did not allow for inferential analysis by geographic region or respondent specialty.

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Author Biographies

Philippe Denis Violette, Western university

Endouroloy Fellow, Division of Urology, Department of Surgery

Suzanne Kamel-Reid, University Health Network University of Toronto

Professor, Molecular Diagnostics, Department of Pathology

Gail E Graham, Children's Hospital of Eastern Ontario and the University of Ottawa

Associate Professor, Department of Pediatrics

M Neil Reaume, The Ottawa Hospital Cancer Centre and the University of Ottawa

Associate professor, Division of Medical Oncology, Department of Oncology

Michael A Jewett, Princess Margaret Hospital, University Health Network, University of Toronto

Professor, Department of Surgical Oncology

Melanie Care, University Health Network

Genetic Counsellor, Department of Molecular Genetics

Stephen E Pautler, Western University

Divistion of Urology, Departement of Surgery

Divisionof Surgical Oncology, Department of Oncology

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Published

2014-11-24

How to Cite

Violette, P. D., Kamel-Reid, S., Graham, G. E., Reaume, M. N., Jewett, M. A., Care, M., Basiuk, J., & Pautler, S. E. (2014). Knowledge of genetic testing for hereditary kidney cancer in Canada is lacking: The results of the Canadian national hereditary kidney cancer needs assessment survey. Canadian Urological Association Journal, 8(11-12), e832–40. https://doi.org/10.5489/cuaj.2415

Issue

Vol. 8 No. 11-12 (2014): CUAJ November

Section

Original Research

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