Responsive cancer care in Asia: stigma and pain must be acknowledged and addressed

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.