Horter Shona, Stringer Beverley, Greig Jane, Amangeldiev Akhmet, Tillashaikhov Mirzagaleb N, Parpieva Nargiza, Tigay Zinaida, du Cros Philipp
Médecins Sans Frontières (UK), Lower Ground Floor, Chancery Exchange, 10 Furnival Street, London, EC4A 1AB, UK.
MSF, Nukus, Uzbekistan.
BMC Infect Dis. 2016 Jul 28;16:362. doi: 10.1186/s12879-016-1723-8.
Treatment for multi-drug resistant tuberculosis (MDR-TB) is lengthy, has severe side effects, and raises adherence challenges. In the Médecins Sans Frontières (MSF) and Ministry of Health (MoH) programme in Karakalpakstan, Uzbekistan, a region with a high burden of MDR-TB, patient loss from treatment (LFT) remains high despite adherence support strategies. While certain factors associated with LFT have been identified, there is limited understanding of why some patients are able to adhere to treatment while others are not. We conducted a qualitative study to explore patients' experiences with MDR-TB treatment, with the aim of providing insight into the barriers and enablers to treatment-taking to inform future strategies of adherence support.
Participants were purposively selected. Programme data were analysed to enable stratification of patients by adherence category, gender, and age. 52 in-depth interviews were conducted with MDR-TB patients (n = 35) and health practitioners (n = 12; MSF and MoH doctors, nurses, and counsellors), including five follow-up interviews. Interview notes, then transcripts, were analysed using coding to identify emerging patterns and themes. Manual analysis drew upon principles of grounded theory with constant comparison of codes and categories within and between cases to actively seek discrepancies and generate concepts from participant accounts. Ethics approval was received from the MoH of the Republic of Uzbekistan Ethics Committee and MSF Ethics Review Board.
Several factors influenced adherence. Hope and high quality knowledge supported adherence; autonomy and control enabled optimal engagement with treatment-taking; and perceptions of the body, self, treatment, and disease influenced drug tolerance. As far as we are aware, the influence of patient autonomy and control on MDR-TB treatment-taking has not previously been described. In particular, the autonomy of married women around treatment-taking was potentially undermined through their societal position as daughter-in-law, compromising their ability to adhere to treatment. Patients' engagement with and adherence to treatment could be hindered by hierarchical practitioner-patient relationships that displaced authority, ownership, and responsibility from the patient.
Our findings reinforce the need for an individualised and holistic approach to adherence support with engagement of patients as active participants in their care who feel ownership and responsibility for their treatment.
耐多药结核病（MDR-TB）的治疗疗程漫长，副作用严重，且在坚持治疗方面存在挑战。在乌兹别克斯坦卡拉卡尔帕克斯坦的无国界医生组织（MSF）和卫生部（MoH）项目中，该地区耐多药结核病负担沉重，尽管有坚持治疗支持策略，但治疗失访（LFT）率仍然很高。虽然已确定了一些与治疗失访相关的因素，但对于为何有些患者能够坚持治疗而有些患者不能，了解有限。我们开展了一项定性研究，以探索患者耐多药结核病治疗的经历，旨在深入了解治疗依从性的障碍和促进因素，为未来的坚持治疗支持策略提供参考。
采用目的抽样法选择参与者。分析项目数据，以便按依从类别、性别和年龄对患者进行分层。对耐多药结核病患者（n = 35）和卫生从业人员（n = 12；无国界医生组织和卫生部的医生、护士和咨询师）进行了52次深入访谈，包括5次随访访谈。使用编码对访谈笔记及随后的文字记录进行分析，以识别新出现的模式和主题。人工分析借鉴扎根理论原则，对案例内部和案例之间的编码和类别进行持续比较，以积极寻找差异并从参与者的叙述中生成概念。获得了乌兹别克斯坦共和国卫生部伦理委员会和无国界医生组织伦理审查委员会的伦理批准。
有几个因素影响治疗依从性。希望和高质量的知识支持依从性；自主性和控制权使患者能更好地参与治疗；对身体、自我、治疗和疾病的认知影响药物耐受性。据我们所知，患者自主性和控制权对耐多药结核病治疗依从性的影响此前尚未有描述。特别是，已婚女性在治疗方面的自主性可能因其作为儿媳的社会地位而受到损害，从而影响她们坚持治疗的能力。医患等级关系将权力、自主权和责任从患者身上转移，可能会阻碍患者参与和坚持治疗。
我们的研究结果强化了采取个性化和整体化方法提供坚持治疗支持的必要性，让患者作为积极参与者参与自身护理，对其治疗感到有自主权和责任感。
