Angels Initiative: Overall winner of this year’s EFPIA Health Collaboration Award

Angels Initiative: Overall winner of this year’s EFPIA Health Collaboration Award

On November 22nd, 2018 EFPIA (The European Federation of Pharmaceutical Industries and Associations) announced winners of this year’s Health Collaboration Award. The overall winner is the Angels Initiative project.

With over 80 entries received from across Europe, The Health Collaboration Awards gives an opportunity to showcase collaborative projects that have benefitted the lives of patients across Europe. Giving her reaction, EFPIA Director General, Nathalie Moll said “As we seek to address the challenges faced by patients and our healthcare systems, partnership and collaboration will be key. No one sector has all the answers and by putting patients at the heart of projects, pooling our resources and expertise and finding new, innovative ways of addressing health needs it is amazing what we can achieve. The entries and winners of this year’s Health Collaboration Awards are fantastic examples of that approach and I hope will provide food for thought and inspiration to us all.”

SAFE is proud to be part of the Angels Initiative project, providing critical information to stroke patients when they most need it, already in the stroke unit. SAFE’s contribution to this amazing project started in May this year simultaneously in 12 European countries: Spain, Serbia, Poland, Czech Republic, Latvia, Croatia, Macedonia, Greece, Ukraine, Georgia, Hungary and Turkey.

In selected hospitals in these countries, stroke patients and their carers will be provided with information on stroke and important next steps on their path to recovery. The patient-focused materials are made of five brochures, including a list of national, regional and local stroke support organisations, with their contact details, in order that patients and carers can access further support in the months and years following their stroke. The information provided in the brochures are kindly provided by the Stroke Association UK and then translated to all project languages, applying the information standard procedure for the translation.

About EFPIA

The European Federation of Pharmaceutical Industries and Associations (EFPIA) represents the pharmaceutical industry operating in Europe. Through its direct membership of 36 national associations and 40 leading pharmaceutical companies, EFPIA’s mission is to create a collaborative environment that enables our members to innovate, discover, develop and deliver new therapies and vaccines for people across Europe, as well as contribute to the European economy. Our vision is for a healthier future for Europe. A future based on prevention, innovation, access to new treatments and better outcomes for patients.

About Angels Initiative

Every 30 minutes a stroke patient who could have been saved, dies or is permanently disabled, because they were treated in the wrong hospital.
Angels Initiative is building a global community of stroke centres and stroke-ready hospitals, working every day to improve the quality of treatment for every stroke patient.
The goal is to get 1500 stroke-ready hospitals around the world by May 2019.
For more information about Angels Initiative, please visit www.angels-initiative.com

 

 

Stroke Support Organisation Faculty Tool Completed as #SSOFT Module 6 goes live today

Stroke Support Organisation Faculty Tool Completed as #SSOFT Module 6 goes live today

Brussels, 21st November 2018 – As the second biggest killer in the world, the response to Stroke needs an army of advocates to ensure  the message that it is preventable, treatable and beatable is implemented. SSOFT is an excellent tool to educate people on the principles of stroke advocacy. It will strengthen their ability to advocate for better stroke prevention, treatment and after care. This module is vital as a contribution to effective public campaigning. We believe that SSOFT will provide inspiration for future stroke advocates to make a real-life change, says Jon Barrick, SAFE President.

The sixth and final eLearning module of the Stroke Support Organisation Faculty Tool (SSOFT) is published today at the following address www.ssoft.info, thus marking the completion of this innovative eLearning tool on stroke support organisation and the principles of stroke advocacy.

The SSOFT’s sixth module focuses on the skills and principles around developing effective public advocacy campaigns.

SSOFT’s development and execution was successfully led by Victoria Brewer, SAFE Project Director, who stressed from the beginning of the project that the members of the SAFE had to be central to the whole process. SAFE members have been actively involved in the development of the content by either testing the modules, providing cases studies or sharing their experience in interviews. These examples have brought much of the content to life by providing real world cases studies of how the knowledge contained in the modules can be applied.

“The opinion of the people who test the program [has been] important. Therefore, SSOFT is exactly what should be: a tool ‘for our members by our members’.” Nenad Nikolić Moždani Udar, the Serbian Stroke Association

The release of the final module marks a significant stage in SSOFT’s development with this stage of development being completed. SAFE is currently exploring future expansion options for SSOFT

“I hope that the tool will never be truly “finished” but remain a live environment that always adapts to the latest developments and experiences.” André de Rosa Spierings, National Board member of Hersenletsel, Netherlands.

About SSOFT’s 6th module

SSOFT’s sixth module focuses on the skills and principles around developing effective public advocacy campaigns. The module is broken down in to five bitesize sections, which cover:

6.1 Public advocacy – focuses on the role of public engagement in advocacy & how to dispel stroke myths to drive change.

6.2 Stroke Community & Mass Campaigning – covers how to build a stroke community & campaign to a large audience

6.3 Publicity – demonstrates how to manage publicity by engaging with print & broadcast media

6.4 Traditional Media – helps learners to understand the role of traditional media &and learn how to work with journalists & editors

6.5 Social Media – examine the role of social media in bringing momentum for change.

About SSOFT

SSOFT is an innovative online eLearning advocacy tool being developed by Stroke Alliance for Europe (SAFE), in partnership with the European Stroke Organisation (ESO).

“I think this is just the beginning; …. I envisage this resource as further strengthening the European stroke patient network and in time the global stroke patient network.” @BelsonSarah

This online learning platform provides knowledge and training on how the creation of effective advocacy activities and campaigns to deliver positive change at a local and national level on stroke prevention, treatment and care. The eLearning platform includes six modules that provide information on:

Module 1: Stroke Support Organisations (SSOs)

Module 2: Making Change Happen

Module 3: Use of Evidence

Module 4: Role of Patient Voice

Module 5: Health & Care System Advocacy

Module 6: Public Advocacy

The modules and learning environment are accessible via the SSOFT website through a simple registration process. Visitors to the website can also learn more about SSOFT, SAFE and ESO, find their nearest SAFE Stroke Support Organisation (SSO) as well as hear from SAFE members about their experiences.

For more information, please send an email ssoft@safestroke.eu or visit www.ssoft.info

Acknowledgments

SAFE would like to take this opportunity to thank and acknowledge the contributions made by those who have helped in the development of SSOFT and module 6.

Stroke Alliance for Europe Board, who have been involved at every stage of development of this module.

The Peer Reviewers for module 6:

  • Stiftung Deutsche Schlaganfall-Hilfe (Dr Markus Wagner)
  • World Stroke Organization (Anita Wiseman)
  • Irish Heart Foundation (Chris Macey)
  • Different Strokes Charity (Austin Willets)
  • Hellenic Alliance/Action for Stroke Support Organization (Dr Hariklia Proios)
  • Macedonian Stroke Association (Dr Anita Arsovska)

Our members who have shared their experiences and knowledge in the video interviews used within the module:

  • Adam Siger – Fundacja Udaru Mózgu, Poland
  • Anita Arsovska – Macedonian Stroke Association
  • Chris Macey – The Irish Heart Foundation, R.Ireland
  • Hrvoje Jurlina – HDPMU Croatian Stroke Society, Croatia
  • Francesca Romana Pezzella – ALICe, Italy
  • Jon Barrick – Stroke Alliance for Europe (SAFE)
  • Mara Cochetti – ALICe, Italy
  • Nenad Nikolić – Moždani Udar, Serbia
  • Pnina Rosenzweig – Neeman Association for Stroke Survivors, Israel

Our member and partner organisations who have collaborated in the development of the module content:

  • World Stroke Organization
  • European Stroke Organisation
  • Stroke Association UK

And all those who participated in the User Acceptance Testing of module 6.

We would also like to thank the project sponsor Bayer Healthcare who have supported this project through an education grant.

About SAFE

The Stroke Alliance for Europe (SAFE) a non-profit-making organisation formed in 2004. It is the voice of stroke patients in Europe, representing a range of patient groups from 30 European countries.

SAFE’s goal is to decrease the number of strokes in Europe by advocating for better prevention, access to adequate treatment, post-stroke care and rehabilitation.

 

Migraines that affect vision may increase risk of irregular heartbeat

Migraines that affect vision may increase risk of irregular heartbeat

Published first on ScienceDaily.com

People who experience migraine with visual aura may have an increased risk of an irregular heartbeat called atrial fibrillation, according to a study published in the November 14, 2018, online issue of Neurology®, the medical journal of the American Academy of Neurology. Migraine with visual aura is when disturbances in vision occur right before head pain begins. Those disturbances may include seeing wavy lines or flashes of light, or having blurry vision or blind spots.

With atrial fibrillation, a form of arrhythmia, the heart’s normal rhythm is out of sync. As a result, blood may pool in the heart, possibly forming clots that may go to the brain, causing a stroke.

“Since atrial fibrillation is a common source of strokes caused by blood clots, and previous research has shown a link between migraine with aura and stroke, we wanted to see if people who have migraine with aura also have a higher rate of atrial fibrillation,” said study author Souvik Sen, MD, MS, MPH, of the University of South Carolina in Columbia. “Atrial fibrillation can be managed through medication, but many people do not realize that they have atrial fibrillation.”

For the study, 11,939 people with an average age of 60 without prior atrial fibrillation or stroke were evaluated for headache. Of those 9,405 did not have headache and 1,516 had migraine. Of those who had migraine, 426 had migraine with visual aura. The participants were followed for up to 20 years.

During the study, 1,623 people without headache, or 17 percent, developed atrial fibrillation while 80 of 440 people with migraine with aura, or 18 percent, developed the condition and 152 of 1,105 people with migraine without aura, or 14 percent.

After adjusting for age, sex, blood pressure, smoking and other factors that could affect risk of atrial fibrillation, people with migraine with aura were found to be 30 percent more likely to develop the condition than people who did not have headaches and 40 percent more likely to develop atrial fibrillation than people with migraine with no aura.

The results translate to an estimated nine out of 1,000 people with migraine with aura having atrial fibrillation compared to seven out of 1,000 people with migraine without aura. Researchers also found that the rate of stroke in the migraine with aura group was four out of 1,000 people annually compared to two out of 1,000 people annually in those with migraine without aura, and three of 1,000 people annually in those with no headache.

“Our research suggests that atrial fibrillation may play a role in stroke in those with migraine with visual aura,” said Sen. “It is important to note that people with migraine with aura may be at a higher risk of atrial fibrillation due to problems with the autonomic nervous system, which helps control the heart and blood vessels. More research is needed to determine if people with migraine with visual aura should be screened for atrial fibrillation.”

A limitation of the study was that the definition of migraine may have left out people who had migraines that lasted less than one year or who had a history of migraine at younger ages. There was also limited information on migraine medications that may influence heart rate.

The study was supported by the National Heart, Lung and Blood Institute and the American Heart Association.

Story Source:American Academy of Neurology. “Migraines that affect vision may increase risk of irregular heartbeat.” ScienceDaily. ScienceDaily, 14 November 2018. <www.sciencedaily.com/releases/2018/11/181114162032.htm>.

New SAFE podcast: Why is stroke so difficult to prevent?

New SAFE podcast: Why is stroke so difficult to prevent?

Why is stroke so difficult to prevent even when we know which risk factors are responsible for around 90% of strokes? SAFE had a conversation about it with Dr Edo Richard, neurologist at the Radboud University medical center in Nijmegen, Netherlands. Dr Richard was the Chair of the 1st Domain Working Group – The Primary Prevention, within the Stroke Action Plan for Europe 2018-2030.

 

Chronic exposure to excess noise may increase risk for heart disease and stroke

Chronic exposure to excess noise may increase risk for heart disease and stroke

Published first on ScienceDaily.com

Exposure to environmental noise appears to increase the risk of heart attacks and strokes by fueling the activity of a brain region involved in stress response. This response in turn promotes blood vessel inflammation, according to preliminary research to be presented in Chicago at the American Heart Association’s Scientific Sessions 2018, a premier global exchange of the latest advances in cardiovascular science for researchers and clinicians.

The findings reveal that people with the highest levels of chronic noise exposure — such as highway and airport noise — had an increased risk of suffering cardiovascular events such as heart attacks and strokes, regardless of other risk factors known to increase cardiovascular risk.

The results of the study offer much-needed insight into the biological mechanisms of the well-known, but poorly understood, interplay between cardiovascular disease and chronic noise exposure, researchers said.

“A growing body of research reveals an association between ambient noise and cardiovascular disease, but the physiological mechanisms behind it have remained unclear,” said study author Azar Radfar, M.D., Ph.D., a research fellow at the Massachusetts General Hospital in Boston. “We believe our findings offer an important insight into the biology behind this phenomenon.”

Researchers analyzed the association between noise exposure and major cardiovascular events, such as heart attacks and strokes, among 499 people (average age 56 years), who had simultaneous PET and CT scan imaging of their brains and blood vessels. Diagnostic validation was done in a subset of 281 subjects.

All participants were free of cardiovascular illness and cancer at baseline. Using those images, the scientists assessed the activity of the amygdala — an area of the brain involved in stress regulation and emotional responses, among other functions. To capture cardiovascular risk, the researchers examined the participants’ medical records following the initial imaging studies. Of the 499 participants, 40 experienced a cardiovascular event (e.g., heart attack or stroke) in the five years following the initial testing.

To gauge noise exposure, the researchers used participants’ home addresses and derived noise level estimates from the Department of Transportation’s Aviation and Highway Noise Map.

People with the highest levels of noise exposure had higher levels of amygdalar activity and more inflammation in their arteries. Notably, these people also had a greater than three-fold risk of suffering a heart attack or a stroke and other major cardiovascular events, compared with people who had lower levels of noise exposure. That risk remained elevated even after the researchers accounted for other cardiovascular and environmental risk factors, including air pollution, high cholesterol, smoking and diabetes.

Additional analysis revealed that high levels of amygdalar activity appears to unleash a pathway that fuels cardiac risk by driving blood vessel inflammation, a well-known risk factor for cardiovascular disease.

The researchers caution that more research is needed to determine whether reduction in noise exposure could meaningfully lower cardiovascular risk and reduce the number of cardiovascular events on a population-wide scale.

In the meantime, however, the new study findings should propel clinicians to consider chronic exposure to high levels of ambient noise as an independent risk factor for cardiovascular disease.

“Patients and their physicians should consider chronic noise exposure when assessing cardiovascular risk and may wish to take steps to minimize or mitigate such chronic exposure,” Radfar said.

Story Source:American Heart Association. “Chronic exposure to excess noise may increase risk for heart disease, stroke.” ScienceDaily. ScienceDaily, 5 November 2018. <www.sciencedaily.com/releases/2018/11/181105081749.htm>.

André de Rosa Spierings: SSOFT Champion & User Acceptance Tester

André de Rosa Spierings: SSOFT Champion & User Acceptance Tester

For a substantial part of my professional career I have worked in the field of digital communication and services. I not only appreciate the value that digital tools can bring to the health care sector from a professional stand point but from a personal one too. Several years ago, my former wife suffered a serious stroke which resulted in her having a severe form of aphasia; her ability to both speak and understand language verbally or in writing was impaired. We found that an iPad could offer many digital solutions for her and she made intensive use of it to help communicate with us.

When I heard that SAFE was exploring a digital way to share knowledge in an innovative way, I was very pleased and naturally wanted to cooperate. Initially, I became involved with the SSOFT Champion Group which consisted of stroke survivors and other members of SSOs from across Europe. We looked at designs, listen to voiceover artists and fed back our input directly back to the design team.  I decided then to also become part of the User Acceptance Testing Group, and I testing the first few modules very intensively due to my experience with digital applications. Thanks to testing work carried out by the various volunteers, the project team was able to make great strides forwards. Every subsequent module developed became better and better.

SSOFT is a fully-fledged eLearning tool that covers the many aspects that play a role in the support and advocacy of people with a stroke. The modules make optimal use of text, images and video to share more knowledge; making it very pleasant to use.

SSOFT has great potential to expand, I hope that the tool will never be truly “finished” but remain a live environment that always adapts to the latest developments and experiences. I would truly like to see it succeed and expand into a community platform where people can share experiences and knowledge across Europe. The first step has been taken with the current version of SSOFT and future developments will become clear through intensive use.

About the author

André is an active National Board member of Hersenletsel.nl, the largest association in the Netherlands that represents the interests of people with non-congenital brain injuries, including stroke. He is also an expert on digital communication and services who advises the government and healthcare sector in the Netherlands. André has been actively involved as a Champion in the initial stages of development of SSOFT as well as a User Acceptance Tester for many of the modules contained with SSOFT.

 

Study: How well do post-stroke reviews support adults with long-term needs after a stroke?

Study: How well do post-stroke reviews support adults with long-term needs after a stroke?

In the UK, health policy recommends that stroke survivors should be reviewed at six-weeks, six-months and at one year after their stroke1,2. However, reviews are carried out differently across the UK and the process has not been properly evaluated. This study explored the review process, focusing on the six-month review. Three sites were selected in England. We interviewed stroke survivors and their carers at six-weeks, six-months, and where possible one year after coming home from hospital. We also observed their reviews and interviewed clinicians, managers and commissioners. We interviewed 46 stroke survivors, 30 carers and 28 professionals.

We found that reviews carried out by stroke nurses were focused on medical issues whereas those completed by a Stroke Association co-ordinator were more focused on social issues. Professionals usually saw the review as an opportunity to follow-up on issues that needed to be dealt with and signpost to other services. However, stroke survivors’ experience of the review was influenced by their experiences in hospital, their understanding of rehabilitation and their relationships with clinicians. They identified different priorities to those of reviewers, particularly when they had other long-term conditions.

Overall, most people found the six-month review helpful but not the six-week or the yearly review. Rather than having the review at set intervals, it would be more helpful if it coincided with coming home from hospital and after community rehabilitation has finished. Reviews need to link with what has gone before, for example, information on preventing another stroke. It would also be helpful to review therapy goals and encourage stroke survivors to set their own new goals for the next stage of their recovery.

Further information: V.J.Abrahamson@kent.ac.uk or @vabrahamsonUoK

Full article: https://onlinelibrary.wiley.com/doi/full/10.1111/hsc.12677#.W9rVLwczfHY.twitter

References:

Department of Health (2007). National Stroke Strategy [Online]. Available from: http://webarchive.nationalarchives.gov.uk/+/www.dh.gov.uk/en/Healthcare/Longtermconditions/Vascular/Stroke/DH_099065.

Royal College of Physicians (2016). National Clinical Guidelines for Stroke. Intercollegiate Stroke Working Party. Fifth Edition [Online]. Available from: https://www.rcplondon.ac.uk/guidelines-policy/stroke-guidelines.

 

Stroke survivors and those at risk urged to focus on yoga and tai chi

Stroke survivors and those at risk urged to focus on yoga and tai chi

Published first on ScienceDaily.com

One of Australia’s biggest health issues could be checked if more people took up yoga or tai chi and reduced their blood pressure, an Australian study has found.

Stroke costs the country $5 billion a year through treatment and loss of productivity, affecting 56,000 Australians in 2017, equivalent to one stroke every nine minutes.

A paper published in Future Neurology by researchers from Monash University, the University of South Australia (UniSA) and the University of Melbourne shows the impact that mindfulness-based interventions (MBIs) such as yoga and tai chi can have on reducing hypertension, fatty acids and blood sugar levels — all risk factors for stroke.

Researchers say both Eastern practices have the potential to mitigate stroke risk as well as help support stroke survivors.

UniSA Senior Lecturer in Human Movement, Dr Maarten Immink, says physical activity plays an important role in preventing recurrent stroke but many stroke survivors may have limited mobility.

“This is where yoga and tai chi are so helpful. They are gentle, movement-based MBIs which help people focus — a state of mind which stroke survivors often lose — and be active at the same time,” Dr Immink says.

The researchers analysed 26 studies published between 1985 and 2017 which examined how yoga and tai chi moderated key stroke risk factors, including blood pressure, cholesterol, diabetes, atrial fibrillation, smoking and alcohol consumption, obesity, anxiety and depression.

UniSA Dean of Health Research, Professor Susan Hillier, says there is increasing evidence that MBIs can be an effective and noninvasive way of reducing hypertension — the biggest stroke risk factor.

“Some evidence suggests that MBIs such as yoga and tai chi regulate blood pressure by teaching people to breathe deeply, balancing and stabilising their autonomic nervous system and lowering their heart rate,” Prof Hillier says.

The stroke specialist says nearly one third of adults around the world suffer from high blood pressure, with 23 million additional strokes projected in the next 12 years.

“Survivors of stroke are at an increased risk of another one — 43 per cent likely within 10 years, 32 per cent within five years and 16 per cent within one year — so it is important we find interventions to help reduce the major risk factors,” she says.

Apart from reducing blood pressure, the research shows that MBIs can help improve diabetics’ health by increasing blood and oxygen supply to the tissues, helping to produce insulin, and boosting anti-oxidants.

Story Source: University of South Australia. “Stroke survivors and those at risk urged to focus on yoga and tai chi.” ScienceDaily. ScienceDaily, 5 November 2018. <www.sciencedaily.com/releases/2018/11/181105105417.htm>.

Dangerous blood pressure caused by specific signalling in the brain

Dangerous blood pressure caused by specific signalling in the brain

Published first on ScienceDaily.com

About 6 million Australians aged 18 years and over have high blood pressure. Of these, more than two thirds had uncontrolled or unmanaged high blood pressure (not taking medication), representing 4 million adult Australians.

High blood pressure, or hypertension, is suggested to be one of the leading risk factors for heart disease.

The process in which high blood pressure causes heart disease is not completely understood.

But now scientists at the Baker Heart and Diabetes Institute have found that high blood pressure caused by specific signalling from the brain promotes heart disease by altering stem cells with the bone marrow.

The results, published in Haematologica demonstrate how an overactive sympathetic nervous system that causes elevated blood pressure can instruct bone marrow stem cells to produce more white blood cells that clog up blood vessels.

The Baker Institute’s Head of Haematopoiesis and Leukocyte Biology, Associate Professor Andrew Murphy says the findings represent a new era of heart disease research.

“Hypertension is a major, independent risk factor of atherosclerotic cardiovascular disease, but we need more information to determine how it is resulting in heart attacks and strokes,” said Associate Professor Murphy.

Atherosclerotic cardiovascular disease is a build-up of cholesterol plaque in the walls of arteries, causing obstruction of blood flow.

“We now know that significance changes in the immune system contributes significantly to heart disease,” he said. “We aimed to determine how the sympathetic nervous system through the brain directly promotes atherosclerosis in the setting of hypertension.”

“We have discovered that this form of high blood pressure, often associated with stress, causes changes within the bone marrow leading to increased white blood cells circulating though our vessels. This is significant as the general view of hypertension is that it is mainly a disease of the blood vessels, which means other heart damaging events are missed.”

The team is now exploring the specific molecules involved, which may shed light as to why some current therapies are ineffective. They also suggest that managing stress, anxiety and pain are likely to help in controlling this form of hypertension and the effects it has on the body’s bone marrow stem cells.

Story Source: Baker Heart and Diabetes Institute. “Dangerous blood pressure caused by specific signalling in the brain.” ScienceDaily. ScienceDaily, 1 November 2018. <www.sciencedaily.com/releases/2018/11/181101085147.htm>.

Podcast #1 – Stroke and Women on StrokePrevention.info

Podcast #1 – Stroke and Women on StrokePrevention.info

Stroke is No. 1 cause of mortality in women in most countries. Some people say it’s because of statistics- we live longer than men. Does this mean that nothing can be done about it?

Jelena Misita, SAFE Awareness and Advocacy Manager had an interview with Valeria Caso, MD, PhD, FESO. Valeria Caso is a stroke neurologist at the University of Perugia Stroke Unit and she is a past ESO President.

Please click on the banner below to access the podcast.