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世界范围内正在增加，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。慢性疾病需要适当的医疗干预，其中大多数治疗费用昂贵。由于这些疾病中有许多不会引起任何症状，有些患者即使已被告知这种疾病，也不寻求治疗。广泛的其他个人、社会和物理环境影响着他们的治疗行为。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，并已在高收入国家证明可以改善对某些慢性疾病的管理。世界卫生组织赞同患者群体在2013年艾滋病毒治疗指南中的作用，然而，这些指南仅限于资源相当充足的艾滋病毒护理。有一些成功的病人支持小组项目，但这些都是基于理论，没有得到很好的评估。在内罗毕的城市非正式社区，自2009年以来就存在着由大约20-30名成员组成的非正式患者小组，在内罗毕的其他地区正在形成更多的小组，但尚未进行评估。这些患者群体是自我维持的，在某种程度上，他们为大量采购药品作出自己的财政贡献，使低收入患者能够负担得起治疗。这些患者群体是一个很有希望的举措，将帮助大多数没有保险的低收入患者以补贴的价格获得药物，并更好地坚持治疗和更好的健康结果。尽管如此，在理解和改善患者的疾病管理方面存在严重的差距，因为我们不知道这种护理模式的哪些方面有效，如果有效，如何更广泛地推广。病人的行为和管理小组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，影响了评估患者组的研究的质量。在广泛推广患者群体之前，需要确定群体的哪些组成部分使其成功，以及如何进一步开发和大规模测试这些特征。在这里，我们建议建立一个基于高血压和糖尿病患者群体长期经验的护理框架，这些患者在当地诊所的护士的定期临床支持下独立运作。我们将观察小组管理过程，与小组成员单独或小组交谈，了解他们对哪些工作有效以及他们可能经历过的挑战的看法。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计划一项更大试验所需的信息，我们打算在几个非洲国家进行类似的未经治疗的患者。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向我们保证，它们将支持这项工作，并承诺在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学科背景和机构支持，这个项目将是可行的，并将继续挽救数百万人的生命，这些生命将因弱势群体中未经治疗的慢性病而失去。

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.