Patient-led support groups in the management of hypertension and diabetes in low-resource settings: mixed methods study of an innovative model

资源匮乏地区以患者为主导的高血压和糖尿病管理支持小组：创新模型的混合方法研究

• 批准号: MR/V004484/1
• 负责人: Gershim Asiki
• 金额: $ 25.08万
• 依托单位: African Population and Health Research Center
• 依托单位国家: 英国
• 项目类别: Research Grant
• 财政年份: 2021
• 资助国家: 英国
• 起止时间: 2021 至 无数据
• 项目状态: 已结题
• 来源: https://gtr.ukri.org/projects?ref=MR%2FV004484%2F1
• 关键词: Patient; led; support; groups; management

Chronic disease conditions such as hypertension and diabetes are increasing worldwide with most of the burden shifting to low and middle-income countries which are still struggling with high infectious diseases burden. Chronic diseases require adequate medical intervention and most of them are expensive to treat. Since many of these diseases do not cause any symptoms some patients do not seek care even when they have been informed about the disease. A wide range of other personal social and physical environment influence their treatment behaviour. Management of chronic diseases by the patient is central to control of its effects. Patient self-help support groups thus provide an environment that would encourage better management of their health and have been shown in high-income countries to improve the management of some chronic diseases. The World Health Organization echoed the role of patient groups in the HIV treatment guidelines of 2013, however, these were limited to HIV care which is fairly well resourced. There have been a few successful programs of patient support groups but these have been theory based and not well evaluated. In the urban informal communities of Nairobi, informal groupings of patients with about 20-30 members each have existed since 2009 and more groups are being formed in other parts of Nairobi but have not been evaluated. These patient groups have been self-sustaining to the extent that they make their own financial contributions for bulk procurement of medicines making treatment quite affordable to low-income patients. These patient groups are a promising initiative that would help low-income patients who are not mostly insured access medications at a subsidized cost and have better adherence to care and better health outcomes. Nonetheless, serious gaps exist in understanding and improving disease management by patients because we do not know which aspects of this model of care have worked and if so, how a wider rollout would be implemented. Patient behavior and other challenges in managing the groups could potentially limit their success. Limitations of study designs coupled with short follow up periods have affected the quality of studies conducted to evaluate the patient groups. Before rolling out the patient groups widely, there is a need to identify which components of the groups make them successful and how such characteristics could be further developed and tested on a large scale. Here, we propose to develop a framework of care based on the longstanding experience of groups of patients with hypertension and diabetes who have been functioning independently with regular clinical support from a nurse from a local clinic. We will observe the group management processes, talk to group members individually and in groups and find their views on what worked well and what challenges they might have experienced. Then we will use this information to develop a framework together with them that we will test and evaluate. This small study will generate information needed to plan a larger trial that we intend to undertake in several African countries with a similar pool of untreated patients. This initial work will bring together investigators of various backgrounds from UK, Netherlands, South Africa and Kenya. The Ministry of Health in Kenya and the Nairobi County Health Department have assured us of their support in this work and commitment to translating this to policy when succesful. We are quite optimistic that given our interdiplinary background as researchers, and institutional support, this project will be feasible to conduct and will go along way saving millions of lives that would be lost due to untreated chronic conditions among vulnerable populations.

高血压和糖尿病等慢性疾病在全球范围内不断增加，大部分负担转移到低收入和中等收入国家，这些国家仍在与高传染病负担作斗争。慢性病需要适当的医疗干预，而且大多数慢性病的治疗费用昂贵，由于许多慢性病不会引起任何症状，有些患者即使被告知患有这种疾病也不寻求治疗。其他各种各样的个人、社会和物理环境也会影响他们的治疗行为。患者对慢性病的管理是控制其影响的核心。因此，病人自助支助小组提供了一个鼓励更好地管理其健康的环境，并在高收入国家显示出改善了对某些慢性病的管理。世界卫生组织在2013年的艾滋病毒治疗指南中重申了患者群体的作用，但这些仅限于资源相当充足的艾滋病毒护理。有一些成功的病人支持小组计划，但这些都是基于理论的，没有得到很好的评价。在内罗毕的城市非正式社区，自2009年以来就存在着非正式的患者群体，每个群体约有20-30名成员，在内罗毕的其他地区正在组建更多的群体，但尚未进行评估。这些病人群体一直在自我维持，他们自己出资批量采购药品，使低收入病人完全负担得起治疗费用。这些患者群体是一项有希望的举措，将帮助大多数没有保险的低收入患者以补贴费用获得药物，并更好地坚持护理和更好的健康结果。尽管如此，在理解和改善患者的疾病管理方面存在严重差距，因为我们不知道这种护理模式的哪些方面起了作用，如果是这样，如何更广泛地推广。患者行为和管理这些群体的其他挑战可能会限制他们的成功。研究设计的局限性加上随访时间短影响了评价患者组的研究质量。在广泛推广患者群体之前，有必要确定这些群体的哪些组成部分使他们成功，以及如何进一步开发和大规模测试这些特征。在这里，我们建议制定一个框架的基础上，长期的高血压和糖尿病患者群体的经验，他们一直独立运作，定期从当地诊所的护士临床支持的护理。我们将观察团队管理流程，与团队成员单独或分组交谈，了解他们对哪些工作做得好以及他们可能遇到的挑战的看法。然后，我们将使用这些信息与他们一起开发一个框架，我们将测试和评估。这项小型研究将产生计划更大规模试验所需的信息，我们打算在几个非洲国家进行类似的未经治疗的患者库。这项初步工作将汇集来自英国、荷兰、南非和肯尼亚的各种背景的调查人员。肯尼亚卫生部和内罗毕县卫生局向我们保证，他们将支持这项工作，并承诺在成功时将其转化为政策。我们非常乐观地认为，鉴于我们作为研究人员的跨学院背景和机构支持，该项目将是可行的，并将沿着拯救数百万人的生命，这些生命将因弱势群体中未经治疗的慢性病而丧生。

项目成果

Effectiveness of self-financing patient-led support groups in the management of hypertension and diabetes in low- and middle-income countries: Systematic review.

• DOI: 10.1111/tmi.13842
• 发表时间: 2023-02
• 期刊: TROPICAL MEDICINE & INTERNATIONAL HEALTH
• 影响因子: 3.3
• 作者: Sanya, Richard E. E.;Johnston, Erin Stewart;Kibe, Peter;Werfalli, Mahmoud;Mahone, Sloan;Levitt, Naomi S. S.;Klipstein-Grobusch, Kerstin;Asiki, Gershim
• 通讯作者: Asiki, Gershim