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

高血压和糖尿病等慢性病在全世界范围内不断增加，大部分负担转移到仍在与高传染病负担作斗争的低收入和中等收入国家。慢性病需要适当的医疗干预，而且大多数疾病的治疗费用都很高。由于这些疾病中的许多不会引起任何症状，一些患者甚至在被告知这种疾病后也不寻求治疗。广泛的其他个人、社会和物质环境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种环境，鼓励更好地管理他们的健康，并已在高收入国家显示出改善对一些慢性病的管理。世界卫生组织在2013年的艾滋病毒治疗指南中呼应了患者群体的作用，然而，这些指南仅限于资源相当充足的艾滋病毒护理。有几个成功的患者支持团体计划，但这些计划都是基于理论，没有得到很好的评估。在内罗毕的城市非正式社区，自2009年以来一直存在非正式的病人团体，每个团体约有20至30名成员，内罗毕其他地区正在组建更多的团体，但尚未对其进行评估。这些患者群体一直在自给自足，因为他们为批量采购药品提供了自己的财政捐助，使低收入患者相当负担得起治疗费用。这些患者群体是一项有希望的倡议，将帮助大多数没有保险的低收入患者以补贴成本获得药物治疗，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仍然存在严重差距，因为我们不知道这种护理模式的哪些方面奏效了，如果奏效了，将如何实施更广泛的推广。在管理这些群体时，耐心的行为和其他挑战可能会限制他们的成功。研究设计的局限性加上较短的随访期，影响了为评估患者组而进行的研究的质量。在广泛推广患者群体之前，需要确定群体中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，我们建议根据高血压和糖尿病患者的长期经验开发一个护理框架，这些患者一直在当地诊所护士的定期临床支持下独立运作。我们将观察小组管理流程，与小组成员单独和小组交谈，了解他们对哪些工作做得很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，我们将对其进行测试和评估。这项小型研究将产生规划一项更大规模试验所需的信息，我们打算在几个拥有类似未治疗患者池的非洲国家进行这项试验。这项初步工作将汇集来自英国、荷兰、南非和肯尼亚的不同背景的调查人员。肯尼亚卫生部和内罗毕县卫生局已向我们保证，他们将支持这项工作，并承诺在取得成功后将其转化为政策。我们非常乐观地认为，鉴于我们作为研究人员的跨部门背景和机构支持，这个项目将是可行的，并将继续进行，以挽救由于弱势群体中的慢性疾病得不到治疗而可能失去的数百万人的生命。

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.