Lexington Urology, Lexington Medical Center, West Columbia, SC.
Participant Research, Interventions, and Measurement (PRISM) Core, H. Lee Moffitt Cancer Center, Tampa, FL.
Urol Oncol. 2023 Jul;41(7):327.e19-327.e26. doi: 10.1016/j.urolonc.2023.03.016. Epub 2023 May 22.
To better understand palliative care knowledge and beliefs of patients with stage II or greater bladder cancer and their caregivers.
Participants were primarily patients diagnosed with muscle-invasive or locally advanced bladder cancer. All were encouraged to enroll with a caregiver (defined as the individual who most closely assists with a patient's care). Participants completed a survey and semistructured interview. Applied thematic analysis techniques were used to analyze the interview data. In total, we recruited 16 dyads, 11 patients who participated alone, and 1 caregiver who participated alone.
Patients and caregivers had high levels of palliative care knowledge and there was no difference in baseline knowledge. Palliative care receptivity was also high, with most participants stating that they would be "very likely" to consider palliative care for themselves or a loved one. However, based on the analysis of multiple-choice palliative care questions and interview transcripts, many participants lacked a nuanced understanding of palliative care and harbored many common misconceptions of the basic tenants. Five main themes emerged related to palliative care: (1) Participants have a general lack of awareness of it, (2) Participants associate it with hospice and death, (3) Participants view it as primarily emotional or psychological support, (4) Participants believe it is for patients without a strong support system, and (5) Participants believe it is for people who have "given up."
High educational attainment and baseline palliative care knowledge did not preclude the most common misperceptions related to palliative care. These study results indicate that patients need clearer counseling regarding the definition, goals, benefits, and availability of palliative care.
更好地了解 II 期或更高级别膀胱癌患者及其护理者的姑息治疗知识和信念。
参与者主要是被诊断为肌层浸润性或局部晚期膀胱癌的患者。所有参与者均被鼓励招募一名护理者（定义为最密切协助患者护理的人）。参与者完成了一项调查和半结构化访谈。采用主题分析技术对访谈数据进行分析。总共招募了 16 对患者-护理者，其中 11 对为患者单独参与，1 对为护理者单独参与。
患者和护理者具有较高的姑息治疗知识水平，且基线知识水平无差异。姑息治疗接受度也很高，大多数参与者表示他们“非常有可能”为自己或亲人考虑姑息治疗。然而，根据多项选择姑息治疗问题和访谈记录的分析，许多参与者对姑息治疗缺乏细致的理解，并且存在许多常见的基本概念误解。五个主要主题与姑息治疗相关：（1）参与者普遍缺乏认识；（2）参与者将其与临终关怀和死亡联系在一起；（3）参与者将其视为主要的情感或心理支持；（4）参与者认为姑息治疗适用于没有强大支持系统的患者；（5）参与者认为姑息治疗适用于那些“已经放弃”的人。
高教育程度和基线姑息治疗知识并不能排除与姑息治疗最常见的误解。这些研究结果表明，患者需要更明确地了解姑息治疗的定义、目标、益处和可获得性。
