Andres Ellie Bostwick, Poco Louisa, Balasubramanian Ishwarya, Chaudhry Isha, Ozdemir Semra, Manalo Maria Fidelis, Rahman Rubayat, Putranto Rudi, Joad Anjum Khan, Bhatnagar Sushma, Palat Gayatri, Mariam Lubna, Kapol Nattiya, Malhotra Chetna
Duke-NUS Medical School, Lien Centre for Palliative Care, 8 College Road, Level 4, Singapore, 169857, Singapore.
The Medical City, Pasig, Philippines.
Support Care Cancer. 2025 Jan 30;33(2):128. doi: 10.1007/s00520-025-09173-7.
This study investigates whether cancer-related stigma and pain among patients with advanced cancer influences their perceptions of receiving responsive care.
We surveyed 2138 advanced cancer patients from 11 hospitals in eight Asian countries. Participants rated their most recent healthcare visit and a hypothetical patient's experience described in vignettes concerning dignity, clarity of information, and involvement in decision-making. We used the vignettes to correct for differences in patients' reporting behaviors.
Overall, 39% of patients perceived cancer-related stigma, and 66% reported moderate or severe pain. While most patients rated their own experience of being treated with dignity (89%), receiving clear information (82%), and involvement in decision-making (79%) as "good" or "very good," they generally rated the vignettes less favorably compared to their own care experience. The negative relationship between perceived stigma and severe pain and health system responsiveness was established through the ordered probit models (p < 0.05 for all domains). Correcting for reporting heterogeneity amplified the negative association for all three domains of health system responsiveness for both moderate and severe pain and perceived stigma (p ≤ 0.01 for all domains).
The widespread prevalence of cancer-related stigma and pain documented in this study across a diverse sample of patients with advanced cancer is concerning. Moreover, perceived stigma and pain pervade patients' interactions with the healthcare system, diminishing their experience of being treated with dignity, receiving clear information, and participating in decision-making. Our findings underscore the importance of addressing stigma and pain to ensure responsive care for advanced cancer patients in Asia.
本研究调查晚期癌症患者中与癌症相关的耻辱感和疼痛是否会影响他们对获得响应性护理的认知。
我们对来自亚洲八个国家11家医院的2138名晚期癌症患者进行了调查。参与者对他们最近的医疗就诊情况以及在 vignettes 中描述的假设患者在尊严、信息清晰度和参与决策方面的经历进行了评分。我们使用 vignettes 来校正患者报告行为的差异。
总体而言,39%的患者感知到与癌症相关的耻辱感,66%的患者报告有中度或重度疼痛。虽然大多数患者将自己在尊严方面接受治疗的经历(89%)、获得清晰信息的经历(82%)和参与决策的经历(79%)评为“好”或“非常好”,但与自己的护理经历相比, 他们对 vignettes 的评价普遍较低。通过有序概率模型确定了感知到的耻辱感、重度疼痛与卫生系统响应性之间的负相关关系(所有领域p < 0.05)。校正报告异质性放大了中度和重度疼痛以及感知到的耻辱感在卫生系统响应性所有三个领域的负相关关系(所有领域p≤0.01)。
本研究记录的与癌症相关的耻辱感和疼痛在不同的晚期癌症患者样本中普遍存在,令人担忧。此外,感知到的耻辱感和疼痛弥漫在患者与医疗系统的互动中,削弱了他们在尊严方面接受治疗、获得清晰信息和参与决策的体验。我们的研究结果强调了解决耻辱感和疼痛对于确保为亚洲晚期癌症患者提供响应性护理的重要性。