SAFE Recommendations

What needs to change

The evidence in this report highlights improvements that are needed across the whole stroke care pathway. The wide disparities in provision between countries and the inequalities within countries found in this report should be of concern to all European policy makers as well as to national Governments and health planners.

The burden of stroke

There is a lack of unified data about stroke and stroke outcomes. Europe-wide comparisons of stroke and stroke care are vital to help each country prevent stroke and provide better care and support for everyone affected by stroke. To make accurate comparisons between different countries, populations and health systems we need agreed and coordinated Europe-wide data collection. Therefore, European policy-makers, in particular the European Commission and the Joint Research Centre, should support and promote the use of a robust Europe-wide stroke register to assess quality of care along the whole stroke pathway.

The number of people having a stroke and the number of people living with the long-term effects of stroke will rise in the coming decades. Effective health care planning and adequate resource allocation across Europe is needed to deal with this, taking into account that the financial burden of stroke is to a large extent borne by stroke survivors themselves and their families.

There are limitations to the current research evidence from the perspective of European stroke survivors (for example, it is largely based on small studies from mostly Western European countries). This research should be conducted more widely throughout Europe, and consolidated findings should be used to influence patient care. SAFE believes that these studies should actively involve stroke survivors and patient organisations.

Preventing stroke

A more systematic, evidence-based approach to public education across the EU is required to improve knowledge of the modifiable risk factors for stroke, i.e. an awareness that those risk factors significantly increase the risk of stroke but can be treated in most cases. Joining forces with public education efforts in relation to the other cardiovascular diseases could create a more powerful message and greater impact.

Current educational campaigns should be assessed for their effectiveness. Our understanding needs to go beyond measuring public knowledge and awareness to look at the extent to which they positively influence public behaviour over time. We should build on what works and make sure public education is both effective and cost effective. Innovative campaigning methods (such as: the use of social media, apps; collaborative campaigns in co-operation with other medical specialties; risk factor education in schools; and risk-factor checks in places such as workplaces or pharmacies) should be assessed.

Across Europe we need rapid and concerted action to prevent stroke and, especially, improvement in the detection and treatment of high blood pressure (hypertension) and atrial fibrillation (AF, an abnormal heart rhythm with rapid and irregular beating). Medical professionals and patients must both be involved through shared decision-making, in order to increase adherence to existing guidelines, and compliance with prescribed medications and frequent blood pressure checks.

Improvement in the diagnosis and management of AF is needed including systematic approaches to identifying and monitoring AF. The effectiveness and cost-effectiveness of AF screening policies of at-risk populations should be assessed in the respective health contexts of each country, as do new developments such as devices and apps for detecting AF, self-monitoring of INR, and new anti-coagulation therapies. A more systematic approach to monitoring guideline adherence (e.g. national or large regional audits), and possibly incentivising this adherence might improve treatment rates.

Timely assessment of suspected TIA patients in specialist clinics should be widely available.

Stroke as a medical emergency

SAFE calls for continuous and sustained awareness-raising campaigns across Europe so that more people understand stroke symptoms and treat stroke as a medical emergency. These should be included in national stroke strategies, financially supported by Governments and should include stroke survivors in their planning and implementation.

We need to know which public education campaigns across Europe have worked best, and why, so that success can be replicated. Systematic assessment of public health campaigns undertaken across Europe is required to prove their effectiveness and improve their impact. More collaborative working with voluntary sector organisations might improve the impact of campaigns.

There should be a more systematic approach towards training healthcare professionals, using evidence-based methods and on- going assessment of its implementation and effectiveness.

There is a need to improve emergency pathways in some centres in order to reduce Door-To-Needle times. Strategies will depend on the respective national, regional, and local health infrastructure.

Acute care

There are still far too few people across Europe being treated in dedicated stroke units with stroke specialist, multidisciplinary staff. Efforts are required, especially in Eastern European countries, but also many Western European areas, to increase the availability of stroke unit care and personnel specialised in stroke care.

Improvement plans should prioritise the consistent implementation of key elements of organised stroke unit care, as laid out in European Stroke Organisation (ESO) and national guidelines.

Comparisons of stroke unit care between European countries are difficult. Standardised, Europe-wide assessment criteria for stroke unit care would encourage international benchmarking and could drive quality improvement.

Thrombolysis is still under-performed across all of Europe. Structural changes to acute stroke care within the respective national and local context could help to improve thrombolysis rates and patient outcomes.

Thrombectomy is currently unavailable to the majority of European stroke patients. Organisational changes are required with hospital networks and regional referral centres in order to facilitate the implementation of thrombectomy across Europe and to make it more widely available.

Rehabilitation and long term support

Too many stroke survivors have to wait too long to get an assessment of their rehabilitation needs and to actually receive therapy. Across Europe the aim should be for multi-disciplinary assessments to take place on the stroke unit, and for rehabilitation to start as soon as someone is medically stable.

Access to rehabilitation therapy must be improved. There is a particular lack of occupational, speech and psychological therapy across Europe.

Too many stroke survivors leave hospital without on-going rehabilitation being in place. This is of particular concern for Early Supported Discharge (ESD) schemes. The evidence is clear that the effectiveness of ESD schemes relies upon access to rehabilitation at the same intensity as would have been provided on the stroke unit.

Ongoing, long-term support and follow up is inadequate in many parts of Europe. We call for national systems to be developed to ensure stroke survivors’ needs are reviewed and followed up.

Countries should set targets for secondary prevention, screening for depression, and for psychological and social support.

The rate of new strokes and stroke deaths, when adjusting for age, has decreased over the last two decades in all European countries. Decreasing rates of new strokes are generally attributed to successful prevention strategies, e.g. hypertension control and smoking cessation. On average, improvements have been larger in Western European countries – increasing the already existing difference between East and West.

However, due to the ageing of the European population and the strong association between stroke risk and age, the numbers of people having a stroke continues to rise. Using data from the Global Burden of Disease study 2015, and demographic projections obtained from Eurostat (statistical office of the EU), a 34% increase in total number of stroke events in the EU between 2015 and 2035 is predicted.

Together with the welcome improvement in survival rates, there are increasing numbers of people living with the effects of stroke, needing specialist supportive care and rehabilitation, resulting in a growing burden of stroke on families, societies and health care systems.

In 2015, direct healthcare costs alone added up to €20 billion in the EU, while indirect costs of stroke due to the opportunity cost of informal care by family and friends and lost productivity caused by morbidity or death were estimated to be another €25 billion. Reducing the incidence of stroke and the likelihood of long-term disability will help to bring down these costs[6, 7].

Preventing stroke
Stroke is preventable, but public knowledge about the risk factors for stroke is low. The impact of educational campaigns aiming to change behaviour is largely short-lived.

The proportion of the population with one or more risk factors for stroke is significant. High blood pressure, the most important risk factor for stroke, is significantly under-treated. The proportion of people with known high blood pressure who achieve adequate blood pressure control is well below half. Atrial fibrillation (AF, an abnormal heart rhythm with rapid and irregular beating), another important risk factor, is often not diagnosed until after a stroke event, or not treated according to widely available, national, evidence-based guidelines.

Emergency care

In stroke care, “time is brain”: patients with suspected stroke need to be admitted to hospital wherever possible, assessed and treated as appropriate within a few hours, to improve their outcomes. However, public awareness of stroke as a medical emergency is poor. An international European study showed that about one in five people could not identify any stroke symptoms and only about half would call an ambulance. Many educational campaigns are being undertaken, but most are not systematically evaluated for their impact.

Similarly, in most European countries there is no evidence that training of medical staff involved in emergency stroke care is implemented and monitored systematically. Many regions have improved their pre- and in-hospital emergency care pathways. There is an opportunity to learn from these experiences and try to replicate them elsewhere.

Stroke units

Improvements in survival have been made particularly since the implementation of stroke units and thrombolysis (clot- busting) treatment. There have been significant increases in the number and quality of stroke units in Europe. However, despite their inclusion in European and national guidelines, it is estimated that only about 30% of european stroke patients receive stroke unit care. Variations between countries, but particularly also between different areas within countries, are large. Rural and remote areas often have poor access.

In order to improve the quality of care received in stroke units, internationally agreed standards of stroke unit care based on evidence and expert opinion have been developed. A system of official accreditation has been introduced on a European level, and also national level in several countries, but uptake is very variable as it is mostly voluntary.

The benefit of thrombolysis is well established. However, thrombolysis rates are still significantly below expectations. Barriers to the delivery of thrombolysis are numerous and complex, depending on the local context: pre-and in-hospital delays, a lack of specialised units or staff, lack of diagnostic equipment, insufficient funding, and decentralised systems of stroke care have all been linked to lower thrombolysis rates.

Rehabilitation and supporting longer-term needs
For many countries, there is very little information on the rehabilitation therapies that stroke survivors receive, especially once they have left hospital. Few countries audit rehabilitation services, and there are inconsistencies in the standards used to measure adherence to guidelines across Europe.

The type and quality of therapies that patients can access often depend on where they live. For example, specialist rehabilitation may only be available in large urban areas. Occupational therapy and psychological support are either very limited or not available at all to stroke patients in several countries. Patients can experience long delays in starting rehabilitation because of a lack of capacity in rehabilitation centres or in the community.

Once patients have been discharged from acute care, access to further rehabilitation is also very variable between and within countries. In around two in five EU countries, outpatient therapies are not generally available. Only a small minority of EU countries have local arrangements to offer stroke survivors a follow-up review with a therapist or doctor, and again, actual practice can vary substantially within a country.

Health insurers and national health authorities rarely offer support with adjusting to life after stroke, such as programmes to support people who want to return to work. In the last 5-10 years most European countries have cut funding of some services that support disabled people, such as training that helps people return to work.

Stroke support organisations (SSOs) exist at a national level in nearly all EU countries. They aim to offer practical, emotional and advocacy support for stroke survivors and their families and, often, promote stroke prevention awareness and action. There is a need for more information on the reach and impact of SSOs.