Bergerot Cristiane Decat, Battle Dena, Bergerot Paulo Gustavo, Dizman Nazli, Jonasch Eric, Hammers Hans J, George Daniel J, Bex Axel, Ljungberg Borje, Pal Sumanta Kumar, Staehler Michael D
Department of Medical Oncology and Experimental Therapeutics, City of Hope Comprehensive Cancer Center, Duarte, CA, United States.
Kidney Cancer Research Alliance (KCCure), Alexandria, VA, United States.
Front Oncol. 2019 Jan 22;9:11. doi: 10.3389/fonc.2019.00011. eCollection 2019.
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.
尽管肾细胞癌（RCC）的治疗取得了诸多进展，但对于患者对癌症护理的看法却知之甚少。开展了一项国际调查，以确定RCC患者报告的与癌症护理相关的困扰点。数据来自于2017年4月1日至6月15日通过社交媒体和患者网络平台进行的在线调查。该调查获取了基线人口统计学、临床病理和治疗相关信息。开放式问题涉及癌症相关护理中的困扰来源以及患者的改善建议。独立评审员对回答进行分类和审查。进行了定性分析，并使用Kruskal-Wallis检验来确定基线特征与困扰来源之间的关联。在接受调查的450名患者中，71.5%报告了困扰来源，分为情感方面（48.4%）或实际方面（23.1%）。最常见的是对复发/进展的恐惧（15.8%）、对癌症护理系统的不信任（12.9%）以及缺乏适当信息（9.8%）。女性性别和非透明细胞组织学与两种类型的困扰均相关，而年龄较大与实际困扰来源相关。患者提出的解决方案包括医护人员更具同情心（20.7%）、更好地获取信息（15.1%）以及开展研究以提高治愈几率（14.7%）。在RCC患者中确定了与情感和实际原因相关的困扰来源。某些人口统计学和临床特征与更多的困扰来源相关。本研究首次描述了通过解决常见困扰来改善患者体验的具体方法。
