Arifin Bustanul, Sarwadan Muhamad G, Wahyudin Elly, Sarifah Latifah M, Fuady Ahmad, Purba Fredrick D, Alkaff Sylmina D, Ardiansyah Akhmad, Madolangan Jamaluddin
Department of Pharmacy, Faculty of Pharmacy, Universitas Hasanuddin, Makassar, Indonesia.
Department of Health Sciences, University Medical Center Groningen (UMCG), University of Groningen, Groningen, the Netherlands.
Narra J. 2025 Aug;5(2):e1317. doi: 10.52225/narra.v5i2.1317. Epub 2025 Apr 21.
Stigma often accompanies people with multidrug-resistant tuberculosis (MDR-TB) and potentially affects their health-related quality of life (HRQoL). The aim of this study was to investigate the stigma faced by patients with MDR-TB, both from the patients' and community's perspective, and its relationship with HRQoL. Data was gathered at the provincial hospital in Makassar, South Sulawesi, Indonesia. The instrument employed in this research was the Indonesian version of the tuberculosis (TB) stigma instrument to assess MDR-TB stigma from the patient and community perspectives. The patient perspective represents how individuals with TB perceive and experience stigma, including the fear of disclosure, isolation, and guilt (feeling responsible for the burden on their family or their own risky behaviors). Meanwhile, the community perspective reflects how individuals with TB perceive societal attitudes towards them, such as social distancing, avoidance, and reluctance to interact. HRQoL was measured using the European quality of life-5 dimensions-5 level version (EQ-5D-5L) instrument. Notably, the evaluation of anxiety and depression is centered on the fifth dimension of the EQ-5D-5L instrument. A total of 210 patients with MDR-TB were included in the study, all of whom reported experiencing stigma. Most participants perceived stigma at a moderate level, with 76% from the patient perspective and 71% from the community perspective. The average EQ-5D-5L index score was 0.72 (95% confidence interval (95%CI): 0.68-0.76). Measurements from both perspectives show similar scores. There is a substantial negative association between the level of stigma and HRQoL, both from the patient's perspective ( =-0.33; F=102.52; <0.001) and the community's ( =-0.32; F=96.76; <0.001). The study highlights that the stigma of MDR-TB significantly affects the HRQoL from the patient and community perspective.
耻辱感常常伴随着耐多药结核病（MDR-TB）患者，并可能影响他们的健康相关生活质量（HRQoL）。本研究的目的是从患者和社区的角度调查耐多药结核病患者所面临的耻辱感及其与健康相关生活质量的关系。数据收集于印度尼西亚南苏拉威西省望加锡的省级医院。本研究采用的工具是印度尼西亚版的结核病耻辱感评估工具，用于从患者和社区角度评估耐多药结核病的耻辱感。患者角度代表结核病患者如何感知和体验耻辱感，包括对披露病情的恐惧、孤立感和内疚感（对给家人带来负担或自身危险行为感到自责）。同时，社区角度反映结核病患者如何感知社会对他们的态度，如社会距离、回避和不愿互动。使用欧洲生活质量五维度五水平版本（EQ-5D-5L）工具测量健康相关生活质量。值得注意 的是，焦虑和抑郁的评估集中在EQ-5D-5L工具的第五维度。本研究共纳入210例耐多药结核病患者，所有患者均报告有耻辱感经历。大多数参与者认为耻辱感处于中等水平，从患者角度看为76%，从社区角度看为71%。EQ-5D-5L指数平均得分为0.72（95%置信区间（95%CI）：0.68 - 0.76）。两个角度的测量结果显示得分相似。耻辱感水平与健康相关生活质量之间存在显著的负相关，从患者角度看（=-0.33；F = 102.52；<0.001），从社区角度看（=-0.32；F = 96.76；<0.001）。该研究强调，耐多药结核病的耻辱感从患者和社区角度均显著影响健康相关生活质量。
