Original Research ARTICLE
Sources of Frustration among Patients Diagnosed with Renal Cell Carcinoma
- 1City of Hope National Medical Center, United States
- 2Kidney Cancer Research Alliance (KCCure), United States
- 3University of Texas MD Anderson Cancer Center, United States
- 4University of Texas Southwestern Medical Center, United States
- 5Duke Cancer Institute, United States
- 6The Netherlands Cancer Institute (NKI), Netherlands
- 7Umeå University, Sweden
- 8Ludwig Maximilian University of Munich, Germany
Despite numerous therapeutic advances in renal cell carcinoma (RCC), little is known about patients’ perspectives on cancer care. An international survey was conducted to identify points of frustration associated with cancer care reported by patients with RCC. Data were obtained from an online survey, conducted from April 1 to June 15, 2017, through social media and patient networking platforms. This survey obtained baseline demographic, clinicopathologic, and treatment-related information. Open-ended questions accessed sources of frustration in cancer-related care and patients’ suggestions for amelioration. Responses were categorized and reviewed by independent reviewers. A qualitative analysis was performed and the Kruskal-Wallis test was used to define associations between baseline characteristics and sources of frustration. Among 450 patients surveyed, 71.5% reported sources of frustration, classified as either emotional (48.4%) or practical (23.1%). The most common were fear of recurrence/progression (15.8%), distrust of their cancer care system (12.9%), and lack of appropriate information (9.8%). Female gender and non-clear cell histology were associated with both types of frustration, and older age was linked to practical sources of frustration. Patients suggested solutions included greater compassion among health care practitioners (20.7%), better access to information (15.1%) and research to improve their chances of being cured (14.7%). Sources of frustration related to emotional and practical causes were identified amongst patients with RCC. Certain demographic and clinical characteristics were associated with more sources of frustration. This study provides the first characterization of specific ways to improve the patient experience by addressing common frustrations.
Keywords: Renal cell carcinoma, Health care survey, Frustration, Fear of cancer recurrence, qualitative study
Received: 03 Aug 2018;
Accepted: 03 Jan 2019.
Edited by:Scott T. Tagawa, Weill Cornell Medicine, Cornell University, United States
Reviewed by:Yousef Zakharia, The University of Iowa, United States
Petros Grivas, University of Washington, United States
Copyright: © 2019 Bergerot, Battle, Bergerot, Dizman, Jonasch, Hammers, George, Bex, Ljungberg, Pal and Staehler. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY). The use, distribution or reproduction in other forums is permitted, provided the original author(s) and the copyright owner(s) are credited and that the original publication in this journal is cited, in accordance with accepted academic practice. No use, distribution or reproduction is permitted which does not comply with these terms.
MD. Sumanta K. Pal, City of Hope National Medical Center, Duarte, United States, email@example.com
MD, PhD. Michael Staehler, Ludwig Maximilian University of Munich, Munich, 80802, Bavaria, Germany, firstname.lastname@example.org