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

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.

The long term ambition of this project is to improve the lives of low and middle-income people living with untreated hypertension and diabetes across Africa through a patient-led model of care. Our work is motivated by the rising burden of hypertension and diabetes in a rapidly urbanising Africa and scarce public resources for managing patients. Patient support groups have gained considerable interest as a strategy to reach low-income patients, however, there is insufficient evidence to scale up such groups widely. We have seen a window of opportunity in long-lived experiences of 6 patient groups in the slums of Nairobi and we want to interview these patients and co-design a model of care and evaluate the feasibility of conducting a large trial. We plan to conduct this through three interrelated work packages. The first work package will be a mixed methods approach starting with ethnographies, focus group discussions, in-depth interviews and survey of patients in the groups. Key informant interviews of healthcare providers will also be conducted. A literature review to assess the adaptability of the models in Africa will follow. This formative work will inform the design of a model that we will pilot (work package 2) in two communities in Nairobi slums. The novel data from the pilot will inform design, sample size, logistical considerations for a multi-country trial. We have assembled a multi-disciplinary team to undertake this task. The last work package (work package 3) entails networking with stakeholders to disseminate findings and for investigators to plan the design of a large trial. We anticipate this work to be completed in 24 months.

Findings from this study will be internationally relevant especially in Africa. Although this development grant is preparatory work for a large multi-country trial, it already creates an interdisciplinary team of researchers with African research experience ready to undertake more collaborative work.

Some findings will be available to share with local stakeholders from this initial work. We will share our findings with academic staff, policymakers, stakeholders, and key organizations.
Throughout our study we will work with different stakeholders to ensure that our dissemination plan results in relevant and meaningful products that each user group can utilise. Our specific dissemination plans are detailed below:
1. Dissemination to academics: we will publish findings in peer-reviewed professional and academic journals and present our results in research conferences.
2. Dissemination to policymakers and stakeholders: We will produce an executive summary to highlight the main findings and policy and practice implications and some policy briefs that will be disseminated in a workshop.
3. Dissemination to wider public and health professionals: we will produce a lay summary and publish it along with the extensive results on our website and other related social media to engage the public on the conversations about group care for patients with chronic care.

We have the Kenya Ministry of Health and Nairobi County Health department on board as partners who will be closely supporting this work and have made a commitment creates a conducive platform to translate evidence into policy and practice.