Kidney cancer survivorship care: Patient experiences in a Canadian setting

The incidence of kidney cancer (KCa) in Canada is rising. Despite this, there is a shortage of research assessing KCa care experiences. This study aims to explore the current experiences of KCa survivors related to treatment and management, information provision, and barriers to care.

A cross-sectional, descriptive study of KCa patients was conducted online and through various cancer centers across Canada. English- and French-speaking adults who received a KCa diagnosis and were currently undergoing treatment or had completed treatment in Canada were eligible to participate.

In total, 368 surveys were completed. Ten percent of respondents had not yet received treatment, 29% were receiving treatment, and 56% had completed treatment. Most respondents (72%) had localized KCa (stage 0-3) at diagnosis. Sixty-one percent of respondents reported that their doctors discussed various treatment options with them and 24% reported discussing applicable clinical trials. Most (85%) respondents received information about their KCa and 36% discussed where to get information about their disease and support. The most commonly reported barriers to care were side effects (26%), system delays (26%), not having access to certain treatments (25%), and financial burden (24%). More participants in Central Region and Quebec (p=0.004) and rural/suburban (p=0.014) areas reported lacking access to certain treatments and KCa experts.

This was the first large-scale study to explore access to care experiences of Canadian KCa survivors. Results show examples of good patient-centered care and provide new practical information that can inform efforts to improve patient-centered care for KCa patients.