Transforming Parkinson's Care in Africa (TraPCAf): protocol for a multimethodology National Institute for Health and Care Research Global Health Research Group project.

BACKGROUND: Parkinson's disease (PD) is the second most common neurodegenerative disorder and, according to the Global Burden of Disease estimates in 2015, was the fastest growing neurological disorder globally with respect to associated prevalence, disability, and deaths. Information regarding the awareness, diagnosis, phenotypic characteristics, epidemiology, prevalence, risk factors, treatment, economic impact and lived experiences of people with PD from the African perspective is relatively sparse in contrast to the developed world, and much remains to be learned from, and about, the continent. METHODS: Transforming Parkinson's Care in Africa (TraPCAf) is a multi-faceted, mixed-methods, multi-national research grant. The study design includes multiple sub-studies, combining observational (qualitative and quantitative) approaches for the epidemiological, clinical, risk factor and lived experience components, as appropriate, and interventional methods (clinical trial component). The aim of TraPCAf is to describe and gain a better understanding of the current situation of PD in Africa. The countries included in this National Institute for Health and Care Research (NIHR) Global Health Research Group (Egypt, Ethiopia, Ghana, Kenya, Nigeria, South Africa and Tanzania) represent diverse African geographies and genetic profiles, with differing resources, healthcare systems, health and social protection schemes, and policies. The research team is composed of experts in the field with vast experience in PD, jointly led by a UK-based and Africa-based investigator. DISCUSSION: Despite the increasing prevalence of PD globally, robust data on the disease from Africa are lacking. Existing data point towards the poor awareness of PD and other neurological disorders on the continent and subsequent challenges with stigma, and limited access to affordable services and medication. This multi-site study will be the first of its kind in Africa. The data collected across the proposed sub-studies will provide novel and conclusive insights into the situation of PD. The selected country sites will allow for useful comparisons and make results relevant to other low- and middle-income countries. This grant is timely, as global recognition of PD and the public health challenge it poses builds. The work will contribute to broader initiatives, including the World Health Organization's Intersectoral global action plan on epilepsy and other neurological disorders. TRIAL REGISTRATION: https://doi.org/10.1186/ISRCTN77014546 .

Experiences of Multidisciplinary Working: Perspectives from the Wessex Ghana Stroke Partnership.

INTRODUCTION: Substantial gaps remain in our understanding of stroke in Africa as well as in stroke care, practice and policy on the continent. The effective organization of preventative, therapeutic and rehabilitative stroke services continue to be challenging in many African countries. METHODOLOGY: In this article we define the nature, function and benefits of effective multidisciplinary team (MDT) working. The experiences and perspectives of members of the MDT were collated by focus group discussions as well as individual and country specific contributions. RESULTS: The experiences and perspectives of multidisciplinary team members from the United Kingdom and Ghana implementing these practices at the first stroke unit in Korle Bu Teaching Hospital, Accra, with a transparent discussion of successes and challenges faced throughout development of the service, is presented. MDT working has improved outcomes for patients and families who use the services, including encouraging better shared treatment planning and compliance. More stroke rehabilitation services are provided than previously, including greater self-management education and better secondary prevention care. CONCLUSION: It is hoped that this article will provide an inspirational model for others working to provide stroke care in low-resource settings in Africa and worldwide.

INTRODUCTION: Des lacunes substantielles subsistent dans notre compréhension de l'accident vasculaire cérébral en Afrique ainsi que dans les pratiques et politiques sur le continent. L'organisation efficace des services de prévention, de traitement et de réadaptation des AVC reste un défi dans de nombreux pays africains. MÉTHODOLOGIE: Dans cet article, nous définissons la nature, la fonction et les avantages d'une équipe multidisciplinaire efficace (PCT).Les expériences et les points de vue des membres de la PCT ont été recueillis par des discussions de groupes de réflexion ainsi que contributions individuelles et spécifiques à chaque pays. RÉSULTATS: Les expériences et les perspectives des membres d'équipes multidisciplinaires du Royaume-Uni et du Ghana, qui ont mis en œuvre ces pratiques dans la première unité d'AVC du de l'hôpital universitaire Korle Bu, à Accra, avec une discussion transparente des succès et des défis rencontrés tout au long du développement du service, sont présentées. Le travail de la PCT a amélioré les résultats pour les patients et les familles qui utilisent les services, notamment en encourageant un meilleur partage du traitement, l'organisation et la complaisance. Davantage de services de réadaptation après un AVC sont fournis plus qu'auparavant, y compris une meilleure éducation à l'autogestion et de meilleurs soins de prévention secondaire. CONCLUSION: Nous espérons que cet article constituera un modèle inspirant pour d'autres personnes travaillant à la prise en charge d'AVC dans des contextes à faibles ressources en Afrique et dans le monde. Mots clés: Unité de expériences, multidisciplinaire, Ghana, partenariat.

The Effect of Cognitive Impairment on the Health-Related Quality of Life Among Stroke Survivors at a Major Referral Hospital in Ghana.

BACKGROUND: The sequelae of stroke include both physical and cognitive impairment. However, the physical impairment usually takes center-stage during rehabilitation, while cognitive impairment is largely ignored. Cognitive deficit is very common following stroke and its assessment and identification is crucial as it impacts on the outcome and rehabilitation of stroke survivors. Very few studies have explored any relationship between cognitive impairment and quality of life after stroke and these studies have been inconclusive. This study set out to explore any relationship that might exist between post-stroke cognitive impairment and quality of life of the survivors. METHODS: A descriptive cross-sectional study was conducted at the Stroke unit of the Korle Bu teaching hospital during which 110 stroke survivors were recruited. A structured questionnaire was used to obtain the demographic, clinical characteristics and risk factor profile of the study participants. The HRQOLISP-26 questionnaire which is a stroke specific quality of life scale was used to assess the QoL in this study while the Montreal Cognitive Assessment Scale (MoCA) was used to assess cognitive deficit. RESULTS: Mean age of the 110 study participants was 61±17 years. Presence of cognitive impairment after 3 months was associated with lower quality of life (p=0.003) while increasing age and level of education were associated with lower scores on MoCA scale (p=0.019, p=0.048 respectively). CONCLUSION: Cognitive impairment is strongly associated with poor quality of life following stroke, therefore, cognitive rehabilitation (and not just physiotherapy) should be considered as an integral component in the management of stroke survivors.

APOL1, CDKN2A/CDKN2B, and HDAC9 polymorphisms and small vessel ischemic stroke.

OBJECTIVE: Worldwide, the highest frequencies of APOL1-associated kidney variants are found in indigenous West Africans among whom small vessel disease (SVD) ischemic stroke is the most common stroke phenotype. The objective of this study was to investigate the association and effect sizes of 23 selected SNPs in 14 genes of relevance, including the APOL1 G1 variants, with the occurrence of SVD ischemic stroke among indigenous West African participants in the Stroke Investigative Research and Education Network (SIREN) Study. MATERIALS AND METHODS: Cases were consecutively recruited consenting adults (aged 18 years or older) with neuroimaging-confirmed first clinical stroke. Stroke-free controls were ascertained using a locally validated version of the Questionnaire for Verifying Stroke-Free Status (QVSFS). Logistic regression models adjusting for known vascular risk factors were fitted to assess the associations of the 23 SNPs in rigorously phenotyped cases (N = 154) of SVD ischemic stroke and stroke-free (N = 483) controls. RESULTS: Apolipoprotein L1 (APOL1) rs73885319 (OR = 1.52; CI: 1.09-2.13, P-value = .013), rs2383207 in CDKN2A/CDKN2B (OR = 3.08; CI: 1.15-8.26, P -value = .026) and rs2107595 (OR = 1.70; CI: 1.12-2.60, P-value = .014) and rs28688791 (OR = 1.52; CI: 1.03-2.26, P-value = .036) in HDAC9 gene were associated with SVD stroke at 0.05 significance level. Polymorphisms in other genes did not show significant associations. CONCLUSION: This is the first report of a specific association of APOL1 with a stroke subtype. Further research is needed to confirm these initial findings and deepen understanding of the genetics of stroke in people of African ancestry with possible implications for other ancestries as all humans originated from Africa.

Stroke Investigative Research and Education Network: Public Outreach and Engagement.

Stroke is becoming a leading cause of disability and death, and a major public health concern in Sub-Saharan Africa (SSA). The Stroke Investigative Research and Education Network (SIREN) seeks to comprehensively characterize the genomic, sociocultural, economic, and behavioral risk factors for stroke and to build effective teams for research to address and decrease the burden of stroke and other non-communicable diseases in SSA. One of the first steps to address this goal was to effectively engage the communities that suffer high burdens of disease in SSA. This paper describes the process of SIREN project's community engagement activities in Ghana and Nigeria. The aims of community engagement (CE) within SIREN are to: i) elucidate information about knowledge, attitudes, beliefs, and practices (KABP) about stroke and its risk factors from individuals of African ancestry in SSA; ii) educate the community about stroke and ways to decrease disabilities and deaths from stroke; and iii) recruit 3000 control research subjects to participate in a case-control stroke study. CE focused on three-pronged activities-constitution and interaction with Community Advisory Board (CABs), Focus Group Discussions (n=27) and community education and outreach programs (n=88). FGDs and outreach programs indicate that knowledge of stroke, as well as risk factors and follow-up evidence-based care is limited and often late. Almost all indicated that genetic testing could help health provider's better treat stroke and help scientists better understand the causes of stroke. Over 7000 individuals have received education on cardiovascular risk factors and about 5,000 have been screened for cardiovascular risk factors during the outreaches. The CE core within SIREN is a first of its kind public outreach engagement initiative to evaluate and address perceptions about stroke and genomics by patients, caregivers, and local leaders in SSA and has implications as a model for assessment in other high stroke risk populations.

Highly Prevalent Hyperuricaemia is Associated with Adverse Clinical Outcomes Among Ghanaian Stroke Patients: An Observational Prospective Study.

BACKGROUND: Although a direct causal relationship between hyperuricaemia and stroke continues to be debated, strong associations between serum uric acid (SUA) and cerebrovascular disease exist. Very few studies have been conducted to evaluate the frequency and association between this potentially modifiable biomarker of vascular risk and stroke in sub-Saharan Africa. Therefore the aim of this study was to examine the association between hyperuricaemia and the traditional risk factors and the outcomes of stroke in Ghanaian patients. METHODS: In this prospective observational study, 147 patients presenting with stroke at a tertiary referral centre in Ghana were consecutively recruited. Patients were screened for vascular risk factors and SUA concentrations measured after an overnight fast. Associations between hyperuricaemia and stroke outcomes were analysed using Kaplan-Meier and Cox proportional hazards regression analysis. RESULTS: The frequency of hyperuricaemia among Ghanaian stroke patients was 46.3%. Non-significant associations were observed between hyperuricaemia and the traditional risk factors of stroke. SUA concentration was positively correlated with stroke severity and associated with early mortality after an acute stroke with unadjusted hazards ratio of 2.3 (1.4 - 4.2, p=0.001). A potent and independent dose-response association between increasing SUA concentration and hazard of mortality was found on Cox proportional hazards regression, aHR (95% CI) of 1.65 (1.14-2.39), p=0.009 for each 100µmol/l increase in SUA. CONCLUSIONS: Hyperuricaemia is highly frequent and associated with adverse functional outcomes among Ghanaian stroke patients. Further studies are warranted to determine whether reducing SUA levels after a stroke would be beneficial within our setting.

Stroke genomics in people of African ancestry: charting new paths.

One in six people worldwide will experience a stroke in his/her lifetime. While people in Africa carry a disproportionately higher burden of poor stroke outcomes, compared to the rest of the world, the exact contribution of genomic factors to this disparity is unknown. Despite noteworthy research into stroke genomics, studies exploring the genetic contribution to stroke among populations of African ancestry in the United States are few. Furthermore, genomics data in populations living in Africa are lacking. The wide genomic variation of African populations offers a unique opportunity to identify genomic variants with causal relationships to stroke across different ethnic groups. The Stroke Investigative Research and Educational Network (SIREN), a component of the Human Health and Heredity in Africa (H3Africa) Consortium, aims to explore genomic and environmental risk factors for stroke in populations of African ancestry in West Africa and the United States. In this article, we review the literature on the genomics of stroke with particular emphasis on populations of African origin.

The profile of risk factors and in-patient outcomes of stroke in Kumasi, Ghana.

BACKGROUND: Stroke is an emerging public health challenge in Ghana requiring urgent attention for its control. Because some of the risk factors for stroke are modifiable, characterisation of these risk factors in the Ghanaian population as well as outcomes of stroke are urgently needed to guide policy for non-communicable diseases. We therefore conducted this study to evaluate the frequencies of the traditional risk factors and outcomes of stroke at the main tertiary referral centre in the middle belt of Ghana in a prospective observational study. METHODS AND RESULTS: Patients with a clinical diagnosis of stroke were consecutively recruited and vascular risk factors were assessed as well as markers of severity of stroke and in-patient treatment outcomes. 265 patients were recruited, 56.6% were females and mean ± SD age of 64.6 ± 14.54 years. 85%, 73% and 58% of patients had systemic arterial hypertension, physical inactivity and obesity respectively as common risk factors. We identified that patients with stroke had a median of 3 traditional risk factors, were unaware of the presence of these risk factors or were poorly controlled if known. Stroke was associated with a high in-patient case fatality rate of 43% principally among patients with haemorrhagic stroke. CONCLUSIONS: Our findings indicate that urgent concerted efforts are required to improve public awareness and management of the prevailing risk factors of stroke in Ghana.

The metabolic syndrome among patients with cardiovascular disease in Accra, Ghana.

BACKGROUND: There is evidence linking the Metabolic Syndrome with an increased risk of developing cardiovascular disease, previously thought to be rare in Africa but now a major public health concern. OBJECTIVES: To determine the frequency of occurrence of the Metabolic Syndrome among patients presenting with cardiovascular disease at the Korle Bu Teaching Hospital, Ghana. METHODS: This was a case-control study of 100 consecutive cardiovascular disease patients and 100 age- and sex- matched controls who underwent an interview and physical examination. Anthropometric measurements and fasting blood samples for plasma glucose and lipids were taken. The National Cholesterol Education Programme: Adult Treatment Panel III criteria were used for the diagnosis of the Metabolic Syndrome. RESULTS: The prevalence of Metabolic Syndrome among cases and controls was 54% and 18% respectively, with the prevalence increasing with advancing age. Hypertension and central obesity were the two components with the highest frequency among individuals with Metabolic Syndrome. The Metabolic Syndrome was associated with the development of cardiovascular disease (OR=5.35, 95% CI: 2.81-10.18, p=0.0001), with the odds ratio increasing with the number of components present. CONCLUSION: The Metabolic Syndrome is prevalent among cardiovascular disease patients attending the Korle Bu Teaching Hospital, with a significant association between the number of components of the Metabolic Syndrome present and the probability of developing a cardiovascular disease. A policy to institute routine screening in clinical practice and provision of appropriate interventions for Metabolic Syndrome components among Ghanaian adults is needed.