Kidney cancer survivorship care: Patient experiences in a Canadian setting

Abstract

Introduction: 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. Methods: 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. Results: 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. Conclusions: 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.