Needs Assessment Survey for the Management of Kidney Cancer.

INTRODUCTION: In this study we determined self-perceived knowledge gaps and continuing medical education preferences among Canadian urologists and medical oncologists related to the treatment of patients with kidney cancer. METHODS: A needs assessment survey was created by the Quality Initiative group of the Kidney Cancer Research Network of Canada using an iterative feedback process. The survey determined knowledge gaps and continuing medical education preferences pertaining to 23 previously validated quality indicators of kidney cancer care. Topics included screening, diagnosis, prognosis, surgical management, systemic therapies and followup care. The survey was distributed via e-mail to Canadian urologists and medical oncologists. RESULTS: Among the 164 respondents 121 (74%) were urologists and 43 (26%) were medical oncologists. The majority of respondents practice in academic (72, 57%) or large urban community centers (40, 32%). Of the 23 quality indicators examined 14 were designated as priority continuing medical education topics based on perceived inadequate knowledge or high interest in the topic. Priority topics were similar for urologists and medical oncologists, and covered the spectrum of kidney cancer care with an emphasis on hereditary kidney cancer and management of advanced disease. Most respondents preferred that continuing medical education be delivered through in person, case based group discussions. CONCLUSIONS: Canadian urologists and medical oncologists report similar knowledge gaps and continuing medical education preferences regarding kidney cancer care. Priority topics include screening for hereditary kidney cancer and management of advanced disease.

Structured assessment and followup for patients with hereditary kidney tumour syndromes.

INTRODUCTION: Optimal clinical assessment and subsequent followup of patients with or suspected of having a hereditary renal cell carcinoma syndrome (hRCC) is not standardized and practice varies widely. We propose protocols to optimize these processes in patients with hRCC to encourage a more uniform approach to management that can then be evaluated. METHODS: A review of the literature, including existing guidelines, was carried out for the years 1985-2015. Expert consensus was used to define recommendations for initial assessment and followup. RESULTS: Recommendations for newly diagnosed patients' assessment and optimal ages to initiate followup protocols for von Hippel Lindau disease (VHL), hereditary papillary renal cancer (HPRC), hereditary leiomyomatosis with renal cell carcinoma (HLRCC), Birt-Hogg-Dubé syndrome (BHD), familial paraganglioma-pheochromocytoma syndromes (PGL-PCC), and tuberous sclerosis (TSC) are proposed. CONCLUSIONS: Our proposed consensus for structured assessment and followup is intended as a roadmap for the care of patients with hRCC to guide healthcare providers. Although the list of syndromes included is not exhaustive, the document serves as a starting point for future updates.

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

INTRODUCTON: 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.