Kotronoulas Grigorios, de la Serna Celia Diez de Los Rios, Drury Amanda, Oldenmenger Wendy H, Kelly Daniel
School of Medicine, Dentistry & Nursing, University of Glasgow, Glasgow, UK.
University of Glasgow, Glasgow, UK.
Support Care Cancer. 2025 Jun 3;33(6):531. doi: 10.1007/s00520-025-09585-5.
Living with advanced renal cell carcinoma (RCC) can be challenging. Previous research suggests that patients are faced with variable complexities, although the main focus has been on physical problems. We aimed to generate empirical evidence to better understand patients' perceptions of adverse impact on wellbeing, to reveal priority concerns, and to explore moderators that could point to a greater risk for declining health status in this patient population.
A prospective, international, and cross-sectional online survey was conducted, comprising a demographic/clinical data form, the Functional Assessment of Cancer Therapy-Biologic Response Modifiers (FACT-BRM) questionnaire, and bespoke closed- and open-ended questions.
Data from 105 participants were analysed. The typical participant was male, on targeted therapy, and middle-aged (median 42 years), with a median of 54 months since diagnosis, and predominantly originated from the USA or UK. Being unable to work (46%), worrying that their condition would worsen (45%), concerns about psychological support for their partner or family (44%), and being burdened by urinary frequency (43%) were major problems for over 40% of this sample. Concerns about future response to treatment, running out of treatment options, cancer relapse, declining health, dying, and impact on family were also expressed. Older age was linked to higher wellbeing scores.
Relying on patient-reported outcomes, we were able to reveal the impact of advanced RCC and its management on several interrelated areas of patient wellbeing. These findings need to be validated in other contexts to ensure they are generalisable.
晚期肾细胞癌（RCC）患者的生活可能充满挑战。以往研究表明，患者面临着各种不同的复杂情况，尽管主要关注点一直是身体问题。我们旨在获取实证证据，以更好地理解患者对健康状况产生负面影响的认知，揭示首要关切问题，并探索可能表明该患者群体健康状况下降风险更高的调节因素。
开展了一项前瞻性、国际性的横断面在线调查，包括一份人口统计学/临床数据表格、癌症治疗功能评估 - 生物反应调节剂（FACT - BRM）问卷，以及定制的封闭式和开放式问题。
对105名参与者的数据进行了分析。典型的参与者为男性，正在接受靶向治疗，中年（中位数42岁），自确诊以来中位数为54个月，主要来自美国或英国。无法工作（46%）、担心病情会恶化（45%）、对伴侣或家人心理支持的担忧（44%）以及尿频带来的负担（43%）是该样本中超过40%的人面临的主要问题。患者还表达了对未来治疗反应、治疗选择用尽、癌症复发、健康状况下降、死亡以及对家庭影响的担忧。年龄较大与更高的健康状况评分相关。
依靠患者报告的结果，我们能够揭示晚期RCC及其治疗对患者健康状况几个相互关联领域的影响。这些发现需要在其他背景下进行验证，以确保其具有普遍性。
