MRC Clinical Trials Unit at UCL, UCL, London, UK.
Mongolian TB Coalition, Ulaanbaatar, Mongolia.
Glob Public Health. 2023 Jan;18(1):2234450. doi: 10.1080/17441692.2023.2234450.
We conducted qualitative research exploring the treatment experience of people with DR-TB. We held nine focus group discussions with 57 adults undergoing/recently completed treatment for DR-TB in Georgia, Mongolia and South Africa. Translated transcripts were analysed using thematic analysis. We identified three higher order themes: (1) Treatment experience and the role of good relationships with healthcare providers: Treatment duration, pill burden and side-effects were challenging aspects of treatment. Side-effects/symptoms that were visible signs of illness were particularly troubling. Good relations with clinical staff helped combat fear and uncertainty regarding treatment. (2) Mental distress and opportunities for wellbeing: The shame, stigma and isolation people experienced as a result of their DR-TB diagnosis was an important cause of mental distress. No longer being infectious enabled people to resume work and socialising. Positive emotions emerged with good treatment outcomes. (3) Fear and worry along the treatment journey: Participants expressed fears about TB: infecting others; whether they would be able to endure treatment; side-effects; health consequences of treatment. Worries mostly disappeared with successful treatment. Alongside measuring side-effects, time to culture conversion and cure rates, future trials of DR-TB treatments should capture how quickly visible symptoms resolve, quality of life measures, and mental health outcomes.
我们开展了定性研究,探索耐多药结核病患者的治疗体验。我们在格鲁吉亚、蒙古和南非与 57 名正在接受/最近完成耐多药结核病治疗的成年人进行了 9 次焦点小组讨论。经过翻译的转录本使用主题分析进行了分析。我们确定了三个更高阶的主题:(1)治疗体验和与医疗保健提供者建立良好关系的作用:治疗持续时间、药物负担和副作用是治疗的挑战方面。可见的疾病迹象的副作用/症状特别令人困扰。与临床工作人员的良好关系有助于消除对治疗的恐惧和不确定性。(2)精神困扰和幸福感的机会:由于耐多药结核病诊断而导致的耻辱感、污名化和孤立是精神困扰的重要原因。不再具有传染性使人们能够恢复工作和社交活动。良好的治疗结果带来了积极的情绪。(3)治疗过程中的恐惧和担忧:参与者对结核病表达了恐惧:感染他人;他们是否能够忍受治疗;副作用;治疗的健康后果。成功治疗后,担忧大多消失。除了衡量副作用、培养物转换时间和治愈率之外,未来的耐多药结核病治疗试验还应捕捉可见症状缓解的速度、生活质量指标和心理健康结果。