Department of Urology, University of Washington, Seattle WA.
Division of Genitourinary Oncology, H.Lee Moffitt Cancer Center and Research Institute, Tampa FL.
Urol Oncol. 2023 Feb;41(2):108.e1-108.e9. doi: 10.1016/j.urolonc.2022.10.013. Epub 2022 Dec 16.
Palliative care is underutilized amongst patients with bladder cancer despite guideline recommendations and known benefits. In order to uncover potential access barriers, we sought to describe patient and caregiver knowledge, attitudes and experiences surrounding palliative care.
We surveyed 272 patients with bladder cancer and their caregivers through the Bladder Cancer Advocacy Network Patient Survey Network. In addition to collecting demographic, socioeconomic, and clinical characteristics, previously studied and validated questionnaires on palliative care knowledge and beliefs were administered. Patients and caregivers were also queried regarding their experiences with palliative care consultation.
Survey respondents demonstrated highly accurate knowledge of palliative care services. Attitudes and beliefs surrounding palliative care were overall positive. Caregivers demonstrated better knowledge and more positive beliefs of palliative care compared to patients. Despite an overall positive sentiment toward palliative care, only 9% of the cohort had palliative care consultation as part of their cancer treatment plan. Most patients with muscle-invasive or metastatic bladder cancer wished that palliative care had been discussed by their providers.
A subset of bladder cancer patients possess accurate knowledge and positive beliefs of palliative care. Palliative care is infrequently discussed during the treatment of bladder cancer, with patients and their caregivers expressing desire for palliative care to be discussed more often. Provider education surrounding palliative care services is imperative to improving access for bladder cancer patients and caregivers.
尽管有指南推荐和已知的益处，但姑息治疗在膀胱癌患者中的应用仍不足。为了发现潜在的就诊障碍，我们试图描述患者和照护者在姑息治疗方面的知识、态度和经验。
我们通过膀胱癌倡导网络患者调查网络对 272 名膀胱癌患者及其照护者进行了调查。除了收集人口统计学、社会经济学和临床特征外，还使用了先前研究和验证过的姑息治疗知识和信念问卷。还询问了患者和照护者关于姑息治疗咨询的经历。
调查对象对姑息治疗服务表现出高度准确的认识。姑息治疗的态度和信念总体上是积极的。与患者相比，照护者表现出更好的知识和更积极的姑息治疗信念。尽管对姑息治疗总体持积极态度，但只有 9%的患者将姑息治疗咨询纳入其癌症治疗计划。大多数肌层浸润性或转移性膀胱癌患者希望他们的医生能讨论姑息治疗。
一部分膀胱癌患者对姑息治疗有准确的认识和积极的信念。姑息治疗在膀胱癌的治疗中很少被讨论，患者及其照护者表示希望更经常地讨论姑息治疗。围绕姑息治疗服务开展的提供者教育对于改善膀胱癌患者和照护者的就诊机会至关重要。
