Abasseri Mostafa, Hoque Shakira, Caldwell Kim, Sheahan Linda, Kochovska Slavica, Agar Meera, Zekry Amany
School of Medicine and Health, UNSW, Sydney, NSW, Australia.
Gastroenterology and Hepatology Department, St George Hospital, Sydney, NSW, Australia.
Am J Hosp Palliat Care. 2025 May;42(5):467-476. doi: 10.1177/10499091241268423. Epub 2024 Aug 19.
BackgroundHepatocellular carcinoma is a burdensome form of liver cancer with an increasing global prevalence. Emerging evidence has shown that early palliative care introduction at diagnosis of any life-limiting illness improves patient and carer outcomes. Despite this, patients with hepatocellular carcinoma usually receive palliative care late. These patients are important stakeholders in the provision of palliative care, but their perceived barriers regarding its delivery are poorly defined.AimThis study aimed to identify the barriers perceived by patients to integrating palliative care into the hepatocellular carcinoma treatment algorithm.DesignPatients living with hepatocellular carcinoma undertook semi-structured interviews about their perceptions of palliative care. We compared these perceptions before and after providing a brief explanation of palliative care. Interview data was inductively coded in NVivo 12 (2018) and thematically analysed.ResultsTwenty-one patients were interviewed. 16 perceived palliative care to mean end-of-life therapy, and nine participants had no prior knowledge of palliative care. After hearing a definition of palliative care, 17 participants reported changed positive attitudes. Seven participants supported a name change, including four participants who continued to reject palliative care following the explanation due to the negative stigma associated with the term 'palliative care'.ConclusionThere is significant misperception about the purpose of palliative care among patients with hepatocellular carcinoma, constituting a barrier to early integration. This can be feasibly addressed with a two-folded educational and renaming initiative to dispel patient misconceptions regarding palliative care. Effective strategies to achieve this should be developed and tested with relevant stakeholders, particularly patients.
背景
肝细胞癌是一种负担沉重的肝癌形式，在全球的发病率呈上升趋势。新出现的证据表明，在诊断出任何危及生命的疾病时尽早引入姑息治疗可改善患者及护理人员的结局。尽管如此，肝细胞癌患者通常在晚期才接受姑息治疗。这些患者是提供姑息治疗的重要利益相关者，但对于其提供过程中存在的明显障碍却缺乏明确的界定。
目的
本研究旨在确定患者认为将姑息治疗纳入肝细胞癌治疗方案存在的障碍。
设计
肝细胞癌患者就其对姑息治疗的看法进行了半结构化访谈。在对姑息治疗进行简要解释前后，我们比较了这些看法。访谈数据在NVivo 12（2018版）中进行归纳编码并进行主题分析。
结果
对21名患者进行了访谈。16人认为姑息治疗意味着临终治疗，9名参与者此前对姑息治疗一无所知。在听到姑息治疗的定义后，17名参与者表示态度发生了积极转变。7名参与者支持更改名称，其中4名参与者在解释后仍因“姑息治疗”一词的负面污名而拒绝姑息治疗。
结论
肝细胞癌患者对姑息治疗的目的存在重大误解，这构成了早期纳入的障碍。可以通过开展双重教育和重新命名举措来消除患者对姑息治疗的误解，从而切实解决这一问题。应与相关利益相关者，尤其是患者，共同制定并测试实现这一目标的有效策略。
