Halt stroke: prevention and rehabilitation of stroke in Uganda (collaboration with AMBSO)

Stroke globally 

According to WHO, 15 million people suffer a stroke annually, and one third of them will subsequently live with disabilities. Common risk factors for stroke are high glucose levels and blood pressure, and for the African context also HIV. Previous Ugandan studies on NCD risk factors found that BMI and age are important, but the risk factors diabetes and hypertension occur at ages 35-60 i.e., 20 years earlier in Uganda than in high-income countries. The global burden of stroke is increasing, and particularly in low-income countries in Africa. Knowledge is lacking in the population about risk factors and how to prevent stroke. Furthermore, access to rehabilitation for stroke survivors is very limited as well as knowledge on how to best use available health services resources. Evidence is lacking on how to lessen the effects of stroke at personal, family or community level. Hence it is urgent to identify strategies for the prevention and early detection of risk for stroke in low-income settings in East Africa to optimize future health policy priorities and reduce the burden of multiple chronic health conditions that are very costly and resource-demanding to monitor and treat once established. To reduce the burden of stroke it has been recommended that the four pillars of the stroke quadrangle should be addressed i.e., surveillance, prevention, acute care and rehabilitation. Together they can lead to the reduction of stroke incidence, prevalence, disability, mortality, and Disability Adjusted Life Years. In HELD:s research group previous research of stroke survivors in Uganda and Kenya knowledge of stroke and health seeking behaviors, the impact of stroke, experiences of participation in activities of everyday life after stroke, and application of stroke secondary prevention have been explored.

Stroke in Sub-Sahara Africa and economic consequences 

The burden of stroke in Africa is rising substantially, and a stroke can cause impairment, activity limitations and participation restrictions in everyday life. Stroke can lead to a stressful situation for family members with risk for depression, perceived burden among caregivers, social isolation, physical problems, and decreased life satisfaction. In Uganda, families are commonly involved and take responsibility for care at the acute hospital but also in community living after stroke. Stroke affects families economically due to a huge caregiver burden which impacts the income levels substantially and as such increase’s poverty. The stroke care may be interrupted due to economic constraints and caregivers can lose their possibilities to work because of a high caregiver burden. Thus, families and close networks are affected and therefore, not only patients, but all persons involved, should be targeted as a unit for sustainable solutions to reduce the poverty that increases as an effect of stroke. 

To prevent the occurrence and recurrence of stroke, knowledge needs to increase in the population of risk factors for stroke and thereby reduce the consequences that leads to economic constraints of the affected families. Family members are at risk for economic sacrifice, depression, caregiver burnout and decreased life satisfaction hence families should be involved in rehabilitation to a greater extent. With rehabilitation, people have better possibilities to return to their daily activities and contribute to supporting the family and reduce the economic impact of the stroke. However, most research and evidence on beneficial effects of prevention and rehabilitation interventions after stroke originates from high-income countries, hence evidence is lacking if such interventions can be implemented with similar outcomes in the context of Sub-Sahara African countries as for example Uganda. 

Africa Medical and Behavioral Sciences Organization (AMBSO) 

A collaboration is ongoing between the research group HELD and Africa Medical and Behavioral Sciences Organization (AMBSO). AMBSO is collecting data from 17 000 households (a representative rural, urban and semi-urban population cohort) on regular basis on many potential risk factors including stroke. In annual large-scale representative sites, data is collected via interviews on demographics, risk behaviors and risk factors, number of births, deaths, and relocation. These surveys are needed to register the prevalence of risk factors and diseases in the absence of population-based health registers in countries where most people seek medical care late or not at all. Most population-based research in East Africa has been performed on infectious diseases, primarily HIV, including the age group 18-49 and only in rural sites. The unique feature of the new (established 2017) AMBSO population health surveillance (Hoima and Wakiso area) is that it captures individuals in a larger age range (13-80 years) which is of importance for stroke and other Non-Communicable Diseases (NCDs) occurring predominantly in older age groups. 

Additional questions on stroke, risk factors, and health literacy have been included in AMBSO’s questionnaire. These generate important information on the incidence and prevalence of stroke and its risk factors, which differ from those in high-income countries. This can contribute to better conditions for prevention efforts and rehabilitation. The knowledge generated in the project will serve as a basis for co-creating a secondary prevention program together with the research group, people with stroke and their family members, local healthcare staff, village elders, and the village doctor, among others (study 4). The PhD student in the project is Robert Bulamba

Purpose and aims

Research questions: In the targeted study sites:

 • How many cases of stroke (prevalence) are reported in the targeted study sites? (study 1)

 • What are the consequences and perceived impact of stroke in stroke survivors? (study 1) 

• Are there any differences in the characteristics of stroke survivors who have received/have not received healthcare services and rehabilitation? (study 1)

• What are the experiences in everyday life of stroke survivors and their family caregivers (dyads)? (study 2) 

• What are the changes in consequences and perceived impact of stroke after one year in stroke survivors? (study 3) 

• What are the needs for rehabilitation as expressed by stroke survivors and their family caregivers? (study 3)

• How can knowledge on the prevalence of stroke, risk factors, use of healthcare services, and experiences from living with the consequences of stroke be used in the development of a comprehensive secondary prevention program? (study 4) 

Methods and Planned Studies The research is registered at ClinicalTrials.gov with the Identifier: NCT0580726