Thrombolysis, Thrombectomy and Acute Stroke Therapy. Series. Part 1

The World Stroke Organization will be publishing over the coming six weeks excerpts from experts on the latest in thrombolysis, thrombectomy and acute stroke therapy. In this blog session some of the most dynamic researchers in stroke will be exploring strokes changing demographics, global rates of thrombectomy, and how current treatments have changed the stroke landscape in this area. A summary of this meeting, and an extended report are available in the International Journal of Stroke, the flagship publication of the World Stroke Organization.  

The objectives of TTST 2018 were to explore the changing landscape of acute ischemic stroke therapy and to address current controversies in thrombolysis and thrombectomy. With the goal of reaching a consensus on how these therapies will evolve over the next several years, data of the relevant neuroscience were presented by experts of the field. Importantly, the emphasis was not only on scientific advances, but also on expanding access by a focus on systems of care with global relevance. Presentation of already published data was discouraged. Invitees were selected to represent all specialties and regions involved in thrombolysis and thrombectomy. The format was a series of 3 or 4 talks on a general topic followed by an open discussion. Each talk was presented by a group of 3 experts and limited to 20 minutes. Another group of 3 or 4 experts led the subsequent discussion, aimed at encouraging frank and open debate among all attendees. This manuscript summarizes the proceedings of TTST 2018.  

Changing demographics of stroke and impact on thrombolysis and thrombectomy 

Global incidence of stroke and projected future trends

Dominique A. Cadilhac, George Howard, Anthony Kim

Annually, stroke is estimated to affect 15 million people worldwide, and is the third leading cause of disease burden.¹In low and middle income countries (LMIC), 94% of deaths from stroke occur in people aged ²A clear understanding of disease trends around the world is important. In the latest systematic review by Thrift and colleagues³, it was confirmed that large geographical variations in stroke incidence and mortality still persist, with the largest burden observed in Eastern European countries and China. However, data are lacking from many countries, making the worldwide assessment of the burden of stroke challenging.  The Global Burden of Disease study has partially addressed this gap by providing estimates of the stroke burden in almost all countries. The estimates are derived by using evidence from the literature and modeling techniques to estimate stroke burden in countries with limited epidemiological information that is overseen by an expert group from 41 countries.^4,5

Although there is evidence that stroke incidence rates have declined, and prevalence rates have remained similar. Between 1990 and 2016 the absolute number of stroke survivors has almost doubled, and it is estimated that currently there are over 80 million people living with stroke (unpublished, Feigin 2018). Of great concern is that over 60% of people living with stroke are younger than 70 years. In HIC like Australia, about 1 in 4 strokes now affects people aged 18-64 years, impacting their ability to work and their role in society.⁶However, the burden of stroke at lower ages is much larger in LMIC where stroke affects people at a younger age and where overall life expectancy is lower. In terms of disability and deaths, the greatest burden currently resides in developing countries, and the gap between developed and developing countries is increasing.⁴Increasing life expectancy and population growth explain some of these trends which are compounded by a global epidemic of people with metabolic risk factors such as obesity, type 2 diabetes, and hypertension,⁴which are important risk factors for stroke.⁵

These changes in the burden of disease from stroke are the result of demographics shifts, as well as health sector and non-health sector trends. Population growth, particularly in the developing world, as well as aging, particularly in upper income and middle-income countries, both contribute to the increasing absolute stroke burden expected in the coming years.⁷Trends in risk factors, such as hypertension, and the expected impact of both favorable and unfavorable trends vary across countries, with unfavorable trends in blood pressure and obesity in China and Brazil for instance, as compared to generally favorable trends in blood pressure and cholesterol in many developed countries, but not obesity.⁵The net impact of these factors is a substantial increase in the relative age-standardized burden of stroke in the developing world. While many developed countries continue to show improvement of long-term trends, a significant increase in the absolute burden of stroke is expected with any potential improvements in incident events been outweighed by demographic shifts.¹

In the US, the absolute age-adjusted mortality rate for stroke has potentially plateaued after decades of decline. Coupled with the continued “greying of America” where the population will continue to age in the coming decades, with a considerable growth in the oldest of the old (age > 85), which will double from 5% to 10% of the population. There are accompanying changes in the race/ethnic distribution of the aged as well (Figure 1).⁶A forecasting model that combines estimates of population growth, assumed stroke incidence rates by age, sex, and race/ethnicity, predicts substantial shifts in the distribution of stroke events over the next 40 years. A more than doubling of the total number of stroke events is expected, with nearly all of this increase in the elderly where the proportion of strokes occurring at ages 75 and older increased from 50% in 2010 to 61% in 2050. Projected changes will also have an impact on the race/ethnic distribution of stroke events with a decrease in the proportion of strokes that occur in whites from 75% to 56%, and an increase in Hispanics from 11% to 24%. These forecasts justify the need to expand capacity to treat patients with stroke, to refine interventions and therapies to the elderly population, and to focus on stroke care for minority populations in the future. We also need to ensure capacity building in LMIC countries to support efforts in the prevention and treatment of stroke, and overall, encourage routine and standardized data collection for better capturing the burden of stroke around the world.

Global rates of thrombolysis and thrombectomy

Dawn Kleindorfer, Werner Hacke, Kazunori Toyoda

Over the past decade, thrombolysis rates have increased particularly in a subset of patients arriving within 2 hours from time of symptom onset. Overall use of intravenous alteplase in patients, without regarding time of arrival or contraindications for alteplase administration, has remained similar.⁸Utilization rate in centers located in urban communities has increased but rural areas don’t exhibit the same pattern. After the publication of pivotal randomized controlled trials, mechanical thrombectomy rates increased significantly in patients arriving up to 4.5 hours after symptom onset with an NIHSS > 5; additionally there was a significant 7% increase in thrombectomy in all stroke patients, despite the fact that almost two-thirds of patients arrive in the late time window.⁹In Germany thrombolysis increased to 13.5% and thrombectomy to 4.5% in 2016; although mechanical embolectomy increased at a lower rate in rural areas. The far majority of patients are being treated in high-volume centers with more than 25 cases/year and more than 50% were treated in centers with over 100 patients/year.¹⁰Asia exhibits very low thrombolysis and thrombectomy rates when compared to each individual country’s population, as presented by Kazunori Toyoda, MD by verbal communication. Access to thrombolysis and thrombectomy centers, along with patient eligibility at the time of hospital arrival may account for this trend. 

Changing stroke demographics and characteristics as a result of preventive interventions and impact on thrombolysis and thrombectomy with focus on atrial fibrillation and large veseel occlusion vs non-large vessel occlusion stroke

Phil Bath, Mitchell S. V. Elkind, Hooman Kamel

The concept of the “epidemiologic transition” has been used to explain the shift in the relative proportions of diseases that may occur in countries as they experience different stages of socioeconomic development.¹¹Epidemiologists have described at least five stages of transition.  In the first stage, pestilence and famine, nutritional deficiencies and infections dominate; in the world of stroke, Chagas disease could occur, for example. The second stage is characterized by diseases related to hypertension, such as hemorrhagic and small vessel strokes, and includes large parts of Asia, including China.  In the third stage, degenerative and man-made diseases, high fat diets, sedentary lifestyles, and cigarette smoking allow chronic, degenerative, and “man-made” diseases, including cardiovascular disease and ischemic stroke, to become more prominent, as in urban India. In the fourth stage, delayed degenerative disorders, there are increased efforts to prevent, diagnose, and treat these lifestyle-related diseases, which allows for a delay in their age of onset as well as the increase in degenerative diseases affecting the elderly. Western Europe and North America are considered to be in this fourth stage of the epidemiologic transition. At this stage, we might expect an increase in large vessel occlusions due to atrial fibrillation and other sources of cardioembolic stroke, as well as effects of large artery atherosclerosis, amyloid angiopathy, and vascular dementia. Finally, a fifth stage of societal upheaval and social regression may exist in which existing health structures break down, leading to a resurgence of conditions seen in the first two stages, as well as to the effects of violence and accidents (parts of post-Soviet Russia has been suggested as an example). Here, vascular neurologists and stroke physicians would encounter traumatic hemorrhages of many types.

Empirical evidence of the epidemiologic transition in relation to stroke was well described in the Sino-MONICA-Beijing project.¹²In this community-based surveillance study, there were temporal trends in stroke incidence and subtype in Beijing over only two decades of rapid economic development, from 1984 to 2004. Four characteristics of the epidemiological transition were observed: declining incidence of hemorrhagic stroke due to improved treatment of hypertension, reduced case fatality due to improved treatment after stroke, increased age of stroke onset, and an expanded proportion of ischemic heart disease deaths with a decreased proportion of stroke deaths in the study population. Additionally, an increase in the incidence of ischemic stroke was found which was felt to be secondary to increased atherosclerotic risk factors. Though not a particular focus of this analysis, it is likely that cardioembolic stroke related to the aging of the stroke population and the increase in ischemic heart disease in particular, and thus large vessel occlusion, would be part of this picture. 

Of course, the epidemiologic transition is not limited to the developing world, and disparities are reflected within all nations. In the United States (US), racial minorities suffer increased stroke mortality and disability rates compared to non-Hispanic whites. African Americans have the highest mortality rates due to stroke and Hispanics have a higher stroke incidence than Whites. In the southeastern US, within a region referred to as the “Stroke Belt”, stroke mortality and incidence rates are increased. The highest rates are found along the coast, in Georgia and North and South Carolina, in a region nicknamed the “Stroke Buckle”.  Variations in race or ethnicity of people comprising the population do not appear to fully explain the disparities in stroke mortality and incidence that exist in the southeastern US, since African-Americans in the Stroke Belt have increased stroke risks compared to those in other parts of the country.¹³The difference may be attributable to socioeconomic factors limiting access to care, producing an increase in the prevalence of stroke risk factors.¹⁴In an analysis of the National Health and Nutrition Examination Survey, moreover, there is evidence that despite improving trends in the burden of cardiovascular risk factors among high-income individuals in the US, low-income populations are not sharing these favorable trends.¹⁵Thus, while there have been improvements in the control of risk factors for cardiovascular disease in the US, it remains unclear that all socioeconomic strata have benefited equally, and as the population grows, we can expect more large vessel occlusion (LVO) stroke to occur. 

In this context, it is also important to ask if there are differences in the risk of LVO by sex or race/ethnicity. The two major stroke mechanisms leading to LVO are cardiac embolism and large-artery atherosclerosis. Although there is less atrial fibrillation (AF), the most common cardioembolic risk factor in women when adjusting for age,¹⁶this issue is less relevant at the time of stroke presentation since women generally present with stroke at a later age. In support of this, there was an essentially even distribution of men and women in trials of mechanical thrombectomy or other acute stroke therapies.¹⁷There are race/ethnicity-related differences in ischemic stroke subtypes, with Caucasians having a greater risk of cardioembolic stroke and Asians a higher risk of large-artery atherosclerosis.¹⁸However, given the contribution of large-artery atherosclerosis and cardiac embolism to LVO, there appears to be no race/ethnic differences in LVO risk.¹⁹

Discussion Panel

Joe Broderick, Devin Brown, Nicole Gonzales, Anjail Sharrief 

With aging of the population and changes in racial demographics in the US, we expect an increased number of strokes in Hispanics, elderly, and females in the coming years and we need to be prepared for this. These changes raise a number of questions. Will we see an increase in patients with cardioembolic stroke requiring a greater demand for endovascular therapy (EVT)? Are we prepared? Do we have the interventionalists situated in the right regions? Currently rural areas are largely underserved. On the other hand, understanding the ‘denominator’ helps to determine which patient population we are going to shift resources towards. The reality is that the percentage of patients eligible for EVT, while growing, is still small. We also need to be prepared to offer treatment to a larger proportion of elderly patients. 

On a global level, there are very limited data in lower income countries where incidence of stroke is increasing. For these countries, the best use of resources may be in prevention. We should not exclude the possibility that some countries may have resources to provide thrombolytic therapy and we should support these countries in establishing stroke centers; however, setting up endovascular labs and advanced imaging does not seem plausible and the public health benefit of EVT much more limited. Even in the US, despite the exciting advances in endovascular treatment, the biggest public health benefits are still in prevention. Finally, it important for us to see input from physicians in lower income countries to determine the type of support that it is needed.

Key Points: 

1.  Stroke incidence forecasting models predict a more than doubling of the total number of stroke events, with nearly all of this increase in the elderly. The racial profile of stroke patients will also rapidly change in the next decade. These forecasts justify the need to expand capacity and treatment of the elderly and minorities.
2. While there have been improvements in the control of risk factors for cardiovascular disease in the US, it remains unclear that all socioeconomic strata have benefited equally, and as the population grows, we can expect more LVO to occur.
3. At present, thrombolysis and thrombectomy rates around the world remain low relative to the clinical burden of stroke. This disparity raises serious questions as to our preparedness for the forecasted increased stroke numbers, and suggests a redoubling of efforts aimed at prevention.

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2. Feigin VL, Krishnamurthi RV, Parmar P, Norrving B, Mensah GA, Bennett DA, Barker-Collo S, Moran AE, Sacco RL, Truelsen T, Davis S, Pandian JD, Naghavi M, Forouzanfar MH, Nguyen G, Johnson CO, Vos T, Meretoja A, Murray CJL, Roth GA, GBD 2013 Writing Group, GBD 2013 Stroke Panel Experts Group. Update on the Global Burden of Ischemic and Hemorrhagic Stroke in 1990-2013: The GBD 2013 Study. Neuroepidemiology. 2015;45:161–176. 

3. Feigin VL, Norrving B, Mensah GA. Global Burden of Stroke. Circ. Res.2017;120:439–448. 

4. Roth GA, Forouzanfar MH, Moran AE, Barber R, Nguyen G, Feigin VL, Naghavi M, Mensah GA, Murray CJL. Demographic and epidemiologic drivers of global cardiovascular mortality. N Engl J Med. 2015;372:1333–1341. 

5. Kim AS, Cahill E, Cheng NT. Global Stroke Belt: Geographic Variation in Stroke Burden Worldwide. Stroke. 2015;46:3564–3570. 

6. Howard G, Goff DC. Population shifts and the future of stroke: forecasts of the future burden of stroke. Ann. N. Y. Acad. Sci.2012;1268:14–20. 

7. Scott PA, Temovsky CJ, Lawrence K, Gudaitis E, Lowell MJ. Analysis of Canadian population with potential geographic access to intravenous thrombolysis for acute ischemic stroke. Stroke. 1998;29:2304–2310. 

8. Schwamm LH, Ali SF, Reeves MJ, Smith EE, Saver JL, Messe S, Bhatt DL, Grau-Sepulveda MV, Peterson ED, Fonarow GC. Temporal trends in patient characteristics and treatment with intravenous thrombolysis among acute ischemic stroke patients at Get With The Guidelines-Stroke hospitals. Circ Cardiovasc Qual Outcomes. 2013;6:543–549. 

9. Smith EE, Saver JL, Cox M, Liang L, Matsouaka R, Xian Y, Bhatt DL, Fonarow GC, Schwamm LH. Increase in Endovascular Therapy in Get With The Guidelines-Stroke After the Publication of Pivotal Trials. Circulation. 2017;136:2303–2310. 

10. Bartig D, Kitzrow M, Brassel F, Busch EW, Nolden-Koch M, Reimann G, Weimar C, Weber R, Eyding J. Verfügbarkeit der mechanischen Thrombektomie bei akutem Hirninfarkt. Der Nervenarzt. 2017;88:1–9. 

11. Yusuf S, Reddy S, Ôunpuu S, Circulation SA, 2001. Global burden of cardiovascular diseases: part I: general considerations, the epidemiologic transition, risk factors, and impact of urbanization. 

12. Zhao D, Liu J, Wang W, Zeng Z, Cheng J, Liu J, Sun J, Wu Z. Epidemiological transition of stroke in China: twenty-one-year observational study from the Sino-MONICA-Beijing Project. Stroke. 2008;39:1668–1674. 

13. CDC. Stroke Hospitalization Rates, 2013-2015 Adult Medicare Beneficiaries, Ages 65+, by County. 2018;:1–1. 

14. Johnston SC, Mendis S, Mathers CD. Global variation in stroke burden and mortality: estimates from monitoring, surveillance, and modelling. The Lancet Neurology. 2009;8:345–354. 

15. Odutayo A, Gill P, Shepherd S, Akingbade A, Hopewell S, Tennankore K, Hunn BH, Emdin CA. Income Disparities in Absolute Cardiovascular Risk and Cardiovascular Risk Factors in the United States, 1999-2014. JAMA Cardiol. 2017;2:782–790. 

16. Chugh SS, Havmoeller R, Narayanan K, Singh D, Rienstra M, Benjamin EJ, Gillum RF, Kim Y-H, McAnulty JH Jr, Zheng Z-J, Forouzanfar MH, Naghavi M, Mensah GA, Ezzati M, Murray CJL. Worldwide Epidemiology of Atrial Fibrillation. Circulation. 2014;129:837–847. 

17.  Goyal M, Menon BK, van Zwam WH, Dippel DWJ, Mitchell PJ, Demchuk AM, Dávalos A, Majoie CBLM, van der Lugt A, de Miquel MA, Donnan GA, Roos YBWEM, Bonafe A, Jahan R, Diener H-C, van den Berg LA, Levy EI, Berkhemer OA, Pereira VM, Rempel J, Millán M, Davis SM, Roy D, Thornton J, Román LS, Ribó M, Beumer D, Stouch B, Brown S, Campbell BCV, van Oostenbrugge RJ, Saver JL, Hill MD, Jovin TG. Endovascular thrombectomy after large-vessel ischaemic stroke: a meta-analysis of individual patient data from five randomised trials.The Lancet. 2016;387:1723–1731. 

18. Ornello R, Degan D, Tiseo C, Di Carmine C, Perciballi L, Pistoia F, Carolei A, Sacco S. Distribution and Temporal Trends From 1993 to 2015 of Ischemic Stroke Subtypes. Stroke. 2018;49:814–819. 

19. Noorian AR, Sanossian N, Shkirkova K, Liebeskind DS, Eckstein M, Stratton SJ, Pratt FD, Conwit R, Chatfield F, Sharma LK, Restrepo L, Valdes-Sueiras M, Kim-Tenser M, Starkman S, Saver JL. Los Angeles Motor Scale to Identify Large Vessel Occlusion. Stroke. 2018;49:565–572. 

About: International symposium on Thrombolysis, Thrombectomy and Acute Stroke Therapy 

The 14^thInternational Symposium on Thrombolysis, Thrombectomy and Acute Stroke Therapy (TTST) took place in Houston, Texas on October 21^stand 22^nd, 2018. TTST meetings began in 1990 during the initial simultaneous clinical investigations into thrombolysis taking place in the United States, Europe, and Japan. Since then, TTST has brought together invited experts on reperfusion therapy for acute stroke every two years, and rotates among venues in Europe, North America, and Asia. TTST has provided opportunities for stimulating controversial discussions on data from recent clinical trials, the status of major ongoing studies, and priorities for future research. Initially focused on thrombolytic therapy, recent TTST conferences have helped lay the groundwork for the success of thrombectomy clinical research.  

Creating a new normal after stroke: the inspiring story of Hilary Wehby

In 2017, Hilary Wehby, a stroke survivor from Jamaica, approached the World Stroke Organization about her desire to establish a stroke foundation to support and educate stroke survivors in her country. Two years on, the Stroke Foundation of Jamaica has become a new member of WSO and Hilary is about to launch her book, My New Normal: Reflections of a Stroke Survivor.

Before her stroke in 2015, Hilary lived a very full and active life; a mother of three children and married for nearly 30 years to a very busy husband. She was involved in a Christian Women's Ministry, and working full time as a senior new product development manager at a fast-paced food company. Life changed dramatically for Hilary when she had her stroke; she was no longer able to work at the place she had been employed for 31 years. Her life began to revolve around her therapy schedule and her family. She was not able to drive and had to depend on others to get around.

Hilary began her journey to a new normal with the belief that her connections in Jamaica with doctors, nursing and counselling networks, Christian ministry and the business community locally, would be useful in her mission to support and educate stroke survivors. ‘I am excited at the prospect of contributing to making education and assistance more widely accessible’ says Hilary.

Hilary has through the years, balanced being a devoted wife and mother, with outstanding scholastic achievement, professional service and social outreach. Describing her “pre-stroke” self, as being “a busybody-always-on-the-go- miss diligent-thorough-always-on-top-of-things person”, she now embrace her “new normal” as enabling and  empowering her. 

Hilary employed her always on the go attitude and connections across various networks, to build the new stroke support organization in Jamaica. The Stroke Foundation of Jamaica’s goals are to reduce the burden of stroke to patients, caregivers and the country through prevention, treatment and long-term care, and support stroke survivors to achieve the highest possible quality of independent life. The foundation is at the beginning of its work and is currently exploring collaborations with a range of stakeholders in Jamaica.

Hilary’s book, My New Normal: Reflections of a Stroke Survivor, will be launched at an event in Kingston, Jamaica on March 7, 2019.

The Angels Initiative won the prestigious 2018 EFPIA Health Collaboration Award

The Angels Initiative won the prestigious 2018 EFPIA Health Collaboration Award for Improving Stroke Care

In November 2018 the European Federation of Pharmaceutical Industries and Associations (EFPIA) announced the winners of the Health Collaboration Award. In competition with 80 submitted projects, the Angels Initiative was the overall winner of the EFPIA Award for 2018.

The Angels Initiative is a unique healthcare programme launched by Boehringer Ingelheim, in partnership with the European Stroke Organisation (ESO), the World Stroke Organization (WSO) and the Stroke Alliance for Europe (SAFE). The Angels Initiative’s goal is to improve stroke outcomes, save lives and reduce long-term disability.

The Stroke Alliance for Europe, a stroke support organisation member of WSO,  collaborated with the Angels Initiative in Europe in 2018. In selected hospitals in 12 European countries: Spain, Serbia, Poland, Czech Republic, Latvia, Croatia, Macedonia, Greece, Ukraine, Georgia, Hungary and Turkey, stroke patients and their carers are provided with information on stroke and next steps on their path to recovery. 

There are five patient-focused brochures, which are translations of Stroke Association UK resources, and include local information. 

 “Patients and medical staff like the brochures. Everyone thinks they are very helpful.”

Adam Siger, Polish stroke support organisation Fundacja Udaru Mozgu

“We didn’t have similar patient materials in the past. Now that we do, patient often take all five different brochures and even try to take more copies, for relatives and neighbours.”

Mikheil Shavgulidze, Georgian stroke organisation Mkurnali Foundation

WSO says no to tobacco industry policy interference

The World Stroke Organization has joined forces with colleagues at the World Heart Federation, World Hypertension League, NCD Alliance and many others to express our concern about an open letter from a tobacco- funded Foundation to the WHO Executive Board. Read our joint statement on why tobacco funded research has no place in health and development policy.

144th Session of the WHO Executive Board, 24 January – February 1st, 2019 Geneva 
Agenda 5.4: Implementation of the 2030 Agenda for Sustainable Development 



Distinguished chair, Members of the Executive Board,


Thank you for the opportunity to deliver this statement on behalf of WHF supported by the Framework Convention Alliance, World Federation of Public Health Associations, International Alliance of Patients' Organizations, World Stroke Organization, World Hypertension League, International Society of Nephrology, American Heart Association, Heart and Stroke Foundation of South Africa, African Heart Network, NCD Alliance, Union for International Cancer Control, Campaign for Tobacco Free Kids, Smoke Free Partnership, Southeast Asian Tobacco Control Alliance, and Advocacy Center Life Ukraine.


We are deeply concerned by the open letter to the WHO EB issued on January 24, 2019, by the so-called “Foundation for a Smoke-free World”.


We would like to remind all delegates of something that they already know: the sad history of the tobacco companies’ cunning communication tactics and their funding of questionable research to delay effective measures to reduce deaths from smoking. It is because of this history that we would like to highlight SDG 3a, which states “strengthen the implementation of the WHO Framework Convention on Tobacco Control in all countries, as appropriate.” Distinguished delegates, as Parties to the WHO Framework Convention on Tobacco Control, you made a binding legal commitment to protect your policy-making process from tobacco industry interference, via Article 5.3 of the Convention.


In support of the statement issued by the FCTC secretariat on the launch of the Foundation for a Smoke-Free World, WHF recommends that no government or organisation should accept money from, endorse, or enter into partnerships with the Philip Morris International (PMI) funded “Foundation for a Smoke-Free World”. The tragedy of the enduring global tobacco epidemic requires us to work hand in hand to implement what works – the implementation of the FCTC. The World Heart Federation pledges to continue to warn all the researchers we work with across the world not to accept money from, endorse or enter into partnerships or conduct research in any way related to this PMI-funded Foundation.


We are confident that none of us will be fooled by the toxic influence of tobacco industry lobbying and funding, no matter how they disguise themselves.

Working together to raise stroke awareness in Ghana

The World Stroke Organization has a growing patient stroke support organization network across the world and in Ghana making connections within this network is helping to raise stroke awareness.

Clara Boatemaa, a 25 year old university student based in Oxford, England contacted the WSO about setting up a charity to support stroke awareness in Ghana. Clara comes from a small town in the suburb  of  Sunyani in Ghana. After the sudden death of her mother from a stroke in 2017, Clara became more aware of how unaware and uneducated people are about stroke in  Sunyani. She has now become passionate about educating people about this disease. 

WSO put Clara in touch with our stroke support organization member, Stroke Association Support Network- Ghana (SASNET Ghana) and together they organized a community stroke awareness programme in Odumase in the Sunyani municipality of the Brong Ahofo Region on 14th and 15th December, 2018.

Clara used the opportunity to raise stroke awareness in the community to mark her mother's one year anniversary.

The major causes of stroke in the community are hypertension, excessive alcohol intake, tobacco smoking and abuse of drugs.

SASNET- Ghana led by the Director of Operations Ad Adams Ebenezer with the support from the Ghana NCD Alliance, organized the two day awareness event in which 1,600 people participated.

On the first day of the programme, the team went on a walk through Odumase with the theme 'Odumase Up  Again After Stroke'. The team shared brochures on  prevention of stroke and other NCDs.

There were  free medical screenings and the common risk factor identified during the screening was elevated blood pressure.

The chiefs and the elders of the community attended the event and Clara was appointed as the SASNET- Ghana  ambassador for the UK. Clara has pledged to help SASNET - Ghana with its goal to establish a rehabilitation centre in the community to enable citizens to check their blood pressure and for people affected by stroke to access rehabilitation.

For more information on SASNET-Ghana visit http://www.strokeghana.org/

Stroke in Low and Middle-Income Countries: UK Networking Event

In the past decade, a number of partnerships have developed between clinical and research teams working in stroke care in the UK, and their counterparts in several low and middle-income countries (LMICs). Earlier this year, an inaugural network event was hosted by the Wessex Ghana Stroke Partnership.  The event was attended by representatives from ten different projects, and was supported by the Tropical Health Education Trust (THET) as part of a Health Partnership Scheme Grant. Attendees are working with stroke services in Ghana, Sierra Leone, Rwanda, South Africa, Uganda, India, Sudan and Vietnam. Projects span practice development, capacity building, and research, across the stroke pathway.  The aim of the network is to bring together UK-based teams to:  

•          Share and reflect on the successes and challenges to supporting sustainable stroke care development in LMICs; identifying common themes and sharing potential solutions. 

•          Identify areas for collaboration, where health partnerships could work together to develop solutions and/or resources that enable stroke care development in LMICs. 

•          Provide a forum for UK-based health care professionals to reflect on the personal development opportunities and challenges associated with involvement in a LMIC health partnership.

Participants decided prior to the event on three key discussion topics: competencies and training; strategic influencing; and demonstrating impact.  The group shared their individual experiences, noting recurring themes and reflecting on what was known, what had been learned, and what could be done better. In this blog, we share some of the themes from these discussions. 

Competencies and Training 

In LMICs, there is typically a less structured system for training and development, and the concept of ‘competence’ differs between countries. Healthcare workers are less likely to be held individually accountable, and may have a different approach to their own professional development than their counterparts in higher income countries (HICs).  It is therefore important to establish what motivates health care professionals to develop their skills and knowledge.  Providing post-training certificates and financial recompense for attending training were commonly expected and appreciated by attendees. 

Staff in LMICs may be more familiar with a didactic approach to training, and can find it difficult to engage in clinical, ward-based or simulation training. Translating theoretical knowledge into consistent changes in clinical practice is particularly challenging.   Multi-disciplinary training was not common but having a variety of health care professionals attend training was useful in helping staff consider how to implement new skills clinically. Keeping focused with a small cohort of trainees also helped build relationships and reinforce clinical skills.  ‘Train the trainer’ models of staff development were useful to make the most of the limited time that UK teams are able to spend in the LMIC partner countries, and to ensure sustainability.

To keep the content appropriate, training topics should be decided and developed with local staff. Focusing on the “must do” messages, rather than the “should do” and “could do” can help avoid overwhelming trainees with too much information. Partnerships had, so far, focussed on core, evidence-based aspects of stroke care that can be improved with little resource, such as introducing bedside swallow assessments and basic dysphagia management, or encouraging early mobilisation.  Creating resources specifically for the context to help deliver messages may also be helpful: for example, in Sudan a local artist created educational posters for display in the hospital.  

Despite lack of resources and infrastructure, many LMIC stroke professionals are eager for knowledge about more advanced or technical interventions (e.g. thrombolysis).  Dedicating training time to facilitate this and continue aspirational clinical practice should be considered; keeping a balance with core stroke skills.  Furthermore, attitudes towards rehabilitation differ considerably from those in HICs, with patients often playing a passive role. Informal caregivers tend to “do for” the individual, and intensive rehabilitation and participation may be viewed by some as cruel.  Equally, expectations and beliefs regarding recovery are challenging, as patient and public understanding of stroke is limited.

Professional groups often work in silos within LMICs, in contrast to the multidisciplinary ethos of HIC stroke care.  Professional groups can be reluctant to share skills across professions, which in part may be due to how payments for services are made. Another barrier is the scarcity of some health professions, such as occupational therapy and speech and language therapy, who are not easily accessible or are totally lacking in many LMIC stroke services.  Broadening the remit of existing professions is one way to work around this.  

There are also hierarchical barriers to team working, with medical models of care predominating. Local leadership is needed to empower all team members.  Role modelling by UK teams and developing processes that enable multidisciplinary work can facilitate movement towards a more multidisciplinary approach. Provision of leadership training for stroke staff has assisted with this in Ghana.  

Demonstrating Impact

Demonstrating the impact of interventions through monitoring and evaluation (M&E) is integral to any partnership work in LMICs. It is important to have open conversations with all key stakeholders when planning any project, to agree on how impact will be measured, so that any M&E is both valuable to all and feasible to complete.  

Patient and public involvement (PPI) should not be overlooked.  However, patient roles and degree of agency are often different in LMICs, which can make engagement more difficult.  As a minimum, teams should consider how to keep patients informed, disseminate information about their projects to the public, and support LMIC clinical teams to think about considering the patient voice.   

For LMIC teams, appropriate information can help service evaluation, empower staff to lobby for change, and motivate teams to maintain positive working practices. Adapting any ongoing M&E may be easier than starting afresh. For the results to be useful to partners, they need to be able to interpret their own data and see how change may be implemented from the results.  It is therefore also important to consider cultural, organisational and hierarchical restrictions to collecting data or implementing change in their setting. 

As well as being useful to frontline staff, demonstrating impact is crucial to demonstrate success to project funders. Funders will expect to see measurable change, so when deciding what the intended impact of any intervention is, consider what is realistic, and the possible consequences if expected outcomes are achieved. 

Clinical measures are often used despite the limited research into the generalisability of common stroke outcome measures in LMIC contexts. Most partnerships have used clinical process measures (e.g. ‘swallow assessment completed’) rather than patient outcome measures to evaluate the success of projects. HIC stroke standards cannot be simply transplanted to LMIC settings; for example, access to dedicated stroke beds may be affected by local politics or funding, and time to assessment will be impacted by local service set up and funding. Standards must be culturally relevant, and must evaluate what is important to local systems and people.  There may also be issues with accurate completion of data collection tools by local staff due to a culture of not admitting error or acknowledging poor practice.  This has an impact on the validity of any M&E.

These partnerships also have an often unrecognised potential to contribute to the professional development of the HIC staff involved, who can gain invaluable skills, experience, cultural awareness and knowledge that can be used in their own workplace.  Further consideration of how to capture and demonstrate this is needed, and could be used to influence employers, governors and funders to support ongoing partnerships.

Strategic influencing

This occurs at multiple levels and settings.  In LMICs , we influence and are influenced by patients, the public, clinical teams, hospital management, and local and central governmental, while we also need to  influence HIC funders, healthcare staff and governing bodies, and other stroke clinicians and researchers.

Change should not be enforced just through applying policies from HICs (e.g. NHS policy) to LMICs; instead it is necessary to build relationships based on trust and open communication, understand cultural influences, and facilitate local staff to initiate and steer the direction and speed of change. Stakeholder analysis was recognised as being useful to enable agenda alignment.  

Many partnerships have experienced that there are often a few key individuals in partner countries who have driven forward change and had strong influence on others locally; finding these ‘door openers’ is important and can greatly influence the success of any project.  

Some common ways for motivating teams on the ground were small, context-specific gestures e.g. providing positive feedback and mentioning staff’s success in newsletters and blogs. Supporting key staff from LMICs to visit HICs can assist their collective understanding of different healthcare systems and consolidate their learning. Stroke care was acknowledged to be an unrecognised and underdeveloped clinical specialty in some LMICs and the building of pride in stroke care by developing understanding of stroke and the possibility of improved outcomes for patients is important. 

Influencing higher stakeholders and encouraging policy change is seen as a critical component in creating long-term change.  The impact of governmental buy-in varies greatly between countries; for some, governmental policy is enforced strictly, for others a policy or procedure may be in place formally but staff on the ground are not empowered to implement it. Political instability and corruption are also potential challenges. Teams may find strength, increased stability and increased influencing power though uniting with other external organisations, such as local patient/carer groups, civic organisations, and national or international stroke organisations.  

Where there is no continuous in-country presence by HIC staff, local staff should be supported via other means (e.g. Skype support) outside of visits.   Similarly, staff returning from visits to LMICs should ensure they handover purposefully and robustly to colleagues, to maintain positive influence. 

Recurring themes

Some of the key challenges experienced by stroke partnerships are: 

• ·      A different concept of competency/training needs
• ·      Culturally different motivations for working in healthcare
• ·      Resource constraints
• ·      Hierarchical systems
• ·      Implementing  knowledge into clinical practice
• ·      Sustaining  change 

There were also common lessons learned, and views on where to focus moving forward.  
Some of the key, take-home messages, were:

• ·      Understand the context
• ·      Work in partnershipand communicate
• ·      Be realistic and address sustainability

We found that there are many parties involved in improving stroke care in LMICs, and we had much to learn from one another. Despite the diverse focus of our individual projects, we faced similar challenges and benefited from sharing knowledge and experiences.  Resources such as standards, guidelines, patient information tools and measurement approaches are useful to all, but they are not always common knowledge.  We decided a forum to share knowledge was a positive move forwards. We must also ensure partners from LMICs are involved in this in the future, to increase our reach and understanding.

Please do get in touch if you would like to join this forum!

The information within this Blog reflects the reported experiences of UK partners, who attended the networking event.  It cannot necessarily be applied to all LMIC settings, and does not directly represent the experience of LMIC partners themselves.

Written on behalf of the attendees by Sophie Bright (Kings-Sierra Leone Partnership), Amelia Shaw and Louise Johnson (Wessex-Ghana Stroke Partnership), Jo Gibson (UCLan Global Health).

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Contact: louise.johnson@rbch.nhs.uk  

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Two go-getting, optimistic and motivated 29-year-olds are #UpAgainAfterStroke

Elise Mathy and Louis Gustin have both had a stroke. Elise suffered an ischaemic stroke in 2017 at the age of 27 and as a result has hemiparesis on her left side. Louis had a stroke in 2015, when he was 25, and has right hemiparesis and aphasia.   

Louis never lost courage or hope. He has been fighting for over three years, and continues to do so today. Little by little, he realised that dialogue is the essence of mankind and that communication defines a human being. After many years of struggle, Louis has put his life back together. Today he can communicate very well indeed, and now he wants to communicate with others across Europe; about strokes, disability, and how they are managed in Europe.

When tragedy struck, Elise had not finished her studies in medicine, but the stroke didn’t stop her – it simply set her back. She continues her rehabilitation in order to regain more of the motor functions that are essential for her (regaining movement in her left arm). 2019 will be a crucial year for Elise, because two years after the stroke that knocked her life off course – she intends to finish her medical studies.

Both Elise and Louis have strength; the strength to fight for what they want most to be #UpAgainAfterStroke; for Louis to regain his speech and for Elise to regain the use of her left arm.

And together they have a plan. For about a year they have been working on a project that meets their shared goals for discovery and adventure. But it’s not just fun and games. They want to share the story of what happened to them, talk about what opportunities for prevention exist, how their debilitating effects of stroke are treated, as well as about the pressing need for rehabilitation using all the research currently available to neuroscience.

The couple want to travel across Europe to meet aphasia and stroke associations, to share their stories and raise awareness. Their vehicle will also be their bedroom. What better than a van? But an adapted one, because Louis uses his left arm and Elise uses her right. They plan to document their journey through a video and book, and the journey will culminate in a conference in France, where they’ll make recommendations for improvements in stroke treatment and care across Europe.

Through their journey they also aim to challenge perceptions about disabilities and about life after stroke.

If you would like to follow Louis and Elise’s incredible project and get involved in supporting their #UpAgainAfterStroke journey please visit www.sadapter.eu or https://www.facebook.com/sadapterEU/ 

Get the recognition you deserve - World Stroke Day Awards 2018

Now that we have all had time to reflect on the impact of our World Stroke Day 2018 events, maybe it's time to get a bit of kudos for all your hard work by applying for a World Stroke Day Award.

World Stroke Day Awards are given to organizations and individuals who demonstrate commitment, creativity and impact in adapting and rolling out the key theme of World Stroke Day at national or local level.

On October 29th 2018 WSO focused global attention on the 80 million people living in the world who have survived stroke and the long-term support needs of stroke survivors and caregivers. We achieved enormous reach and couldn't have done it without the hard work of our members and stroke stakeholders around the world.

If you want your campaign to be considered you can apply for an award using the online application form on the World Stroke Campaign website.

Award winners will receive free annual membership of WSO and will be invited to attend a World Stroke Congress Award Ceremony in 2020.

Closing date for applications is 21st December.  Award winners will be announced in February 2019.