Report from the joint session of the WFN and the World Stroke Organization (WSO) at the WSO Congress in Toronto.

By Wolfgang Grisold

The Congress of the World Stroke Organization took place in October 2023 in Toronto.

In addition to the traditional joint session of the WFN and WSO at the World Congresses of Neurology, since 2022 the WSO and WFN have established joint sessions at the WSO Congresses.

Last year’s topic was education; this year’s topic was palliative care in stroke patients.

Speakers were:

Chairs:

• Kiechl (Austria)/Grisold(Austria)

Speakers:

• Gillian Mead (UK)
• Stefan Kiechl (Austria)
• Wolfgang Grisold (Austria): WFN.
• David Oliver (UK).

Prof. Kiechl presented epidemiological data on stroke worldwide. The large number of strokes as the most frequent neurological disease and the high mortality within five years after stroke were discussed. The Austrian stroke system, which is quite elaborate from the acute phase toward rehabilitation, was explained, and the role of palliative care discussed.

On behalf of the WFN, we discussed the worldwide availability of guidelines and recommendations for palliative care in stroke, as well as principles including the WHO recommendations and the ethical principles of autonomy, benefice, non-maleficence, and justice (Jansen 2022). A comparison with other palliative paradigms is important (Steigleder, Kollmar, and Ostgathe 2019) and for several neurological disease entities different concepts are needed.

For acute strokes, several guidelines and and recommendations exist (example: Braun et al. 2016), however little information exists on the palliative situations in stroke survivors, who have a high risk of recurrence as well as a high morbidity within five years. Stroke often leaves patients with impairment and disability (Wijeratne et al. 2023).

Following the hospital phase, often pain, sensory disturbances , sleep pathology, weakness, and sarcopenia appear. Loss of independence, existential worries, and often stigma with disability follow. Mental symptoms such as depression, apathy, also anxiety, agitation, and delirious states may occur (Cowey et al. 2021). (See Table 1.) Depending on the strategic localization of stroke, also neuro- cognitive sequelae of various nuances can be observed (examples: Anton’s syndrome, Capgras syndrome, among others).

Table 1

The ability of communication can be compromised by several factors. (See Table 2.)

Suicidal tendencies in stroke patients are rarely mentioned and have been described in mainly small studies (Paolucci and Ngeh 2015), (Paolucci and Ngeh 2015) and in few general reviews. (Vyas et al. 2021).

Particular attention should be paid to the fact that increasing frailty impairs the compensation of the entire organ system and leads to a global decline in performance “Seneca effect”. (Bardi 2017). Stroke is one cause of the collapse of complex, poorly compensated biological systems in older and often multimorbid and frail patients.

It is worth noting that data from nursing home patients on chronic stroke treatment, therapies, and rehabilitation are largely lacking (Cowman et al. 2010), and this is a gap between acute stroke treatment and the long term follow-up.

The next session was given by Prof. Gilian Mead (UK) and highlighted the role of the family in the course of the disease and in decision-making processes (Visvanathan et al. 2020). Ethical principles such as autonomy, doing good, doing no harm, and justice are the principles, as well as basic principles of palliative care in neurological diseases (Kluger et al. 2023).

An important aspect is the patient’s mental capacity, which determines the decision-making process: the ability to understand information, to critically analyze its content in terms of discussion or reflection, and finally to make decisions. The role of the family in patients who cannot express an opinion is important and requires many considerations. The literature has not yet addressed this issue in sufficient detail. Concepts for information about the disease, symptoms, and measures such as “tailored talks” with detailed and understandable templates for patients and relatives are useful. The concept of shared decision making involves the doctor, patient, and family (or partner) making further decisions together (Armstrong 2017) (Prick et al. 2022). Important aspects are unrealistic expectations about prognosis, outcome, and prognostication, both on the part of the patient/family and the clinician.

Table 2

The effects of severe strokes on the further quality of life are often underestimated. This might cause an enormous impact on future lifestyle. (Fig.1)

In addition, cultural differences must be taken into account, and the effects caused by the stroke must be considered. Immediately after the stroke, there are important challenges for the family, which often needs support.

Slide shown by Prof. Mead at the WSO session in Toronto (reproduced with permission). Prof. Mead quoted Maya Angelou.

Prof. DJ Oliver (UK) spoke about the meaning of “end of life” and expected death. In contrast to many other neurological conditions, the changes occur suddenly, often without warning, and are accompanied by major changes in lifestyle. For the family, the catastrophic changes are compounded by uncertainty about future developments, such as the possibility of regression of the neurological deficit. The sometimes-unjustified hope of improvement through neuro-rehabilitation needs to be explained and discussed, and the expectation needs to be realistic.

In all cases, appropriate symptomatic treatment is important. Particularly in acute cases, there are unstable and complex situations that require complex decisions. Mental and psychosocial aspects also need to be considered.

However, preferences and priorities for desired future treatment require intact mental capacity.

In the joint discussion, the importance of the patient and family coming to terms with the stroke was discussed. There are undoubtedly more recommendations for the acute stroke phase than for the chronic phase, with the factor of permanent or increasing disability also having to be considered. Studies of nursing home patients show that there is a strong need to consider special measures for institutionalized patients with a history of stroke.

A further focus of investigation and research should be dedicated to stroke survivors who are prone to recurrence in the following five years, have a high comorbidity, and a high mortality rate. Especially for patients with disabilities and institutionalized patients, the aspects of palliative care need to be considered. •

Wolfgang Grisold is president of the WFN.

References

Plenary speakers shared their latest research on topics such as diabetic neuropathies, Parkinson’s disease, ALS, and global health care equity.

The 26th World Congress of Neurology was held Oct. 15-19 in Montreal. This combined in-person and virtual meeting was attended by over 3,500 neurologists from 129 countries. The highlight of the meeting was a series of plenary lectures given by world experts in a variety of subjects, ranging from a rare disease to neuroepidemiology. They brought their insights into a plethora of important neurological problems, from rare diseases to the World Health Organization’s plan to address neurological diseases across the globe. Summaries and salient messages are presented below.  All of the subjects covered important issues that concern neurologists and that can potentially affect billions of people around the world.

–Guy Rouleau, vice president of the WFN

Hosted in Montreal, the 2023 World Congress of Neurology united experts to address key neurology challenges. Plenary speakers shared their latest research on topics such as diabetic neuropathies, Parkinson’s disease, ALS, and global health care equity.

Dr. Tarun Dua from the World Health Organization emphasized the urgency in tackling neurological disorders, shaping a collaborative atmosphere.

The congress served as a hub for diverse perspectives and initiatives. Explore the discussions in each plenary lecture by reading the full press releases linked with each lecture.

The Global Importance of Diabetic Neuropathies

Eva Feldman, MD, PhD, James W. Albers Distinguished University Professor, and Russell N. DeJong, Professor of Neurology, University of Michigan

Type 2 diabetes has reached epidemic proportions, and complications like ulcers and amputations not only impact quality of life but also strain health care systems worldwide. During her plenary lecture, Dr. Eva Feldman cast a light on diabetic peripheral neuropathy (DPN), a major complication of diabetes and a leading cause of global disability. Discover the latest insights into the global burden of DPN and learn about the urgent need for new treatment approaches, education, and lifestyle changes to combat this worldwide challenge.

Read the full press release.

The WHO, IGAP, and Brain Health

Tarun Dua, MD, Head, Brain Health Unit, World Health Organization, Switzerland

Neurological conditions are the second-leading cause of death and the leading cause of disability worldwide. The World Health Organization’s new Intersectoral Global Action Plan provides a critical blueprint for combating neurological conditions and calls for urgent action from governments and health care organizations around the world. Dr. Tarun Dua discussed this landmark coordinated effort to tackle the challenges posed by neurological disorders, including the five key objectives for addressing these conditions worldwide and 10 global targets to be achieved by 2031.

Read the full press release.

The Epidemiology and Burden of Neurological Disorders

Valery Feigin, MD, PhD, Professor of Neurology and Epidemiology, National Institute for Stroke and Applied Neurosciences, Auckland University of Technology, New Zealand

Low- and middle-income countries currently experience a disproportionate degree of the global burden of neurological disorders. Dr. Valery Feigin revealed groundbreaking findings from the latest Global Burden of Disease (GBD) study. Learn about the top 10 neurological conditions causing 90% of global disability and see how this data can aid neurologists and global health organizations in reducing health care disparities in low- and middle-income countries.

Read the full press release.

Status of Disease-Modifying Therapy in Parkinson’s Disease

Anthony Lang, MD, Professor of Neurology, Jack Clark Chair for Parkinson’s Disease Research and Lily Safra Chair in Movement Disorders, University of Toronto, Canada

Parkinson’s disease is one of the fastest-growing neurological diseases on the planet. But what if researchers could detect signs of the disease years before symptoms start to show? During his plenary lecture, Dr. Anthony Lang presented a groundbreaking new model for identifying and studying Parkinson’s disease. This approach will help researchers investigate biological aspects of the disease that may be detectable many years before symptoms begin to show.

Read the full press release.

Clinical Trial Progress in ALS

Merit Cudkowicz, MD, Chair, Massachusetts General Hospital Department of Neurology; Director, Sean M. Healey & AMG Center for ALS, Massachusetts General Hospital; Julieanne Dorn Professor of Neurology, Harvard Medical School

One of the central challenges of amyotrophic lateral sclerosis (ALS) research is finding ways to slow the progression of this relentlessly degenerative disease. Several late-stage clinical trials in ALS have had positive results. In addition, recently, two promising experimental drugs were advanced to phase 3 clinical trials as part of the innovative HEALEY ALS Platform Trial. Dr. Merit Cudkowicz’s lecture highlighted the drugs currently being tested in the HEALEY ALS Platform Trial as well as several other recently approved ALS medications, the promise of gene therapies, and a proposed new biomarker that is aiding in the development of treatments and research.

Read the full press release.

The Rett Syndrome: From Clinics to Genetics

Huda Zoghbi, MD, Professor of Molecular and Human Genetics, Baylor College of Medicine

Rett Syndrome is a delayed-onset childhood disorder that causes a broad range of severe neurological disabilities, including loss of the ability to speak and socialize, and the development of tremors, ataxia, seizures, autonomic dysfunction, and stereotypic hand-wringing movements. In her lecture, Dr. Huda Zoghbi, MD, discussed what her lab has learned about Rett pathogenesis and the significance of MeCP2 protein levels in maintaining healthy brain function. She outlined how an insufficient amount of this protein contributes to Rett syndrome, while an excess (resulting from gene duplication) leads to another severe neurological condition.

Read the full press release.

Transformations in the Treatment of Stroke

Liping Liu, MD, PhD, Director, Neurointensive Care Unit (NICU), Neurology and Stroke Center, Beijing Tiantan Hospital, Capital Medical University, China

Stroke is a leading cause of disability worldwide. However, giving certain treatments—called reperfusion therapies—soon after the start of a stroke can dramatically improve patient outcomes and minimize long-term brain damage. Dr. Liping Liu highlighted recent advancements in stroke treatment and strategies for addressing the global burden of stroke. She presented recent research on the effectiveness of reperfusion therapies for ischemic stroke and advocated for increasing awareness and training in these types of therapies for the global neurology community.

Read the full press release.

President of African Academy of Neurology Calls for Urgent, Unified Action to Address Lack of Trained Neurologists

Dr. Augustina Charway-Felli, President of the African Academy of Neurology

Africa is faced with critical shortages of neurologists and health care funding, leading to some of the world’s highest rates of disability from neurological disorders. Dr. Augustina Charway-Felli presented a strategic plan at the WCN. The proposal underscores regional training to bolster Africa’s neurologist count and prioritizes educating primary care providers. Dr. Charway-Felli advocated for a unified approach focusing on training, reducing brain drain, increasing specialized neurologists, and public education. Interregional collaboration and WFN accredited training centers in Dakar, Senegal; Rabat, Morocco; Cairo, Egypt; and Cape Town, South Africa, are vital components. The plan aims to alleviate the severe neurologist shortage and improve neurological care accessibility in Africa.

Read the full press release.

Kathy Oliver Champions Global Action for Patient Organizations at the 26th World Congress of Neurology

Kathy Oliver, chair of the International Brain Tumor Alliance

Patient engagement is gaining prominence in healthcare with Kathy Oliver championing this movement. Oliver emphasized the pivotal role of patient organizations in shaping clinical trials, drug development, health care policy, and regulatory issues. Patient engagement enhances research quality and resource allocation by aligning with patients’ priorities. Oliver highlighted five priorities for effective patient collaboration, stressing clear expectations, focusing on patients’ perspectives, promoting mutual learning, fostering effective collaboration, and ensuring timely involvement. Central to this approach is the principle “nothing about us, without us,” advocating for patient centrality in health care decisions.

Read the full press release.

Neurologist Reveals the Hidden Neurological Consequences of Historic Pandemics

Hadi Manji, MD, Consultant Neurologist and Honorary Associate Professor at the National Hospital for Neurology, United Kingdom

Although the height of the COVID-19 pandemic may be behind us, millions of people continue to experience disabling complications like long COVID—and researchers still don’t understand the full scope of COVID-19’s impact on the brain. During the congress, Dr. Hadi Manji shed light on the neurological complications of COVID-19 by exploring similar long-term complications of global pandemics, including the Spanish flu pandemic of 1918, HIV/AIDS, and Zika virus. This enlightening lecture explored what past pandemics can teach us about diagnosing and treating current post-infection complications like HIV-associated neurocognitive disorder (HAND) and long COVID, which impact millions of people worldwide.

Read the full press release. •

Identifying problem statements, technology can help provide simple solutions that go a long way in bridging lapses in treatment.

Dr. Bindu Menon and Dr. Medha Menon

By Dr. Bindu Menon and Dr. Medha Menon

Epilepsy, when put simply, is a brain disorder that causes recurrent seizures. This disease can manifest as the typical jerky movements of limbs as well as only sensory complaints recorded as electrical disturbances on electroencephalography (EEG). This wide variation of disease manifestation makes it a condition one must be wary of and have a high index of suspicion. The number of cases of epilepsy touches 50 million globally, 80% of whom reside in middle- to low-income countries like India¹.

It is important to realize why one must be wary of a disease that’s prevalent in such high numbers. Surely, its ubiquity implies the presence of a well-structured management plan? However, the enormity of the problem can become the hamartia of the disease.

One must first realize that more than three-quarters of the disease burden resides in regions that are struggling to bridge the treatment gap. In a world where everything is run by money, the catastrophic expenditure on health burdens every family in the lesser privileged sections of economy. This expenditure encompasses costs of medication, hospitalization, and continuation of care. The onus to balance livelihood and health falls on the patient, and when this burden becomes too much, they tend to stop being compliant to treatment — an ignition to the vicious cycle of expense and hospitalization.

Another stark problem one sees in the lower income countries is the stigma attached to the disease. The typical flailing of limbs often described as demonic possession in archaic times still brings out a level of unnecessary discomfort in onlookers of a seizure episode. These thoughts are easily curbed through a proper understanding of the disease. In a way, the stigma that hurdles a patient’s progress when vanquished empowers the community to provide moral support to the patient and their family.

The root of these problems is often lack of knowledge of the disease and so it is only natural that the solution is proper education and awareness. In this digitally advanced world, we must keep up and take advantage of the speed and extent of the reach of technology. Where once it was physically difficult to reach remote areas, in this day and age the internet and satellite connections help us reach the same areas remotely.

One such advancement is the Epilepsy Help App launched by our Foundation in India² April 2016 — a free mobile app that can be downloaded on Android phones. It is available in English as well as vernacular languages and keeps record of a patient’s personal details, appointments, and reports.

When a patient presents to the emergency department with a seizure, it is of utmost importance that the doctor knows which medication and dosage the patient is on. The app shows the record of patient’s medications as well as has alarms for taking them, since a single missed medication can prove to be devastating to their life. Besides this, the patient can maintain a seizure diary within the app. The app has facilities for a bystander to take a video of a patient having a seizure attack, which proves to be of great value to a doctor to discern a diagnosis. On the whole, this app helps keeps track of a patient’s disease for their as well as the doctor’s benefit.

Among the patient stories we have permission to share was of one college student on three anti-seizure medicines. He often received different injections in the emergency department and was prescribed different cocktails of medicines due to his lack of record keeping. But with this app, he is documenting his prescriptions and scans and has currently been seizure free for eight months. The most useful feature for him, “For me, the drug reminder alarm is a huge help, and it makes sure I have not missed medications like I used to before.”

Another story was about the usefulness of keeping a video diary. An office worker who stayed in the dorms away from his family suffered from jerky motions, which were misdiagnosed as a seizure attack. Hence, he was put on wrong medication. But record-keeping of videos at several instances — once in the dorms, another at his home, and one while he was outside with friends who all knew of the app in his phone, helped in reaching the right diagnosis of a nonepileptic attack disorder upon physician review.

Another application is a Tele Awareness³ initiative, which is a toll-free number that can be called to receive information about epilepsy. It is accessible to all, and this number when disseminated in large numbers when in medical camps, helps ensure that the general population is made aware of the disease, its risk factors, management, and the need for treatment compliance. Furthermore, it is in these medical camps that they are made aware that the societal stigma about the disease needs to be abolished.

Stroke is another disabling disease that affects everybody differently. The life of a patient and their family changes drastically after a stroke which makes rehabilitation a crucial part of the spectrum of stroke care. Rehabilitation is all about getting back to a normal life and living a life as independently as possible. A venture in this direction is the Stroke Help app. This app has various physiotherapy exercises which are specific to the stroke deficits. The exercises are for passive and active limb exercises, handgrip and dexterity, positioning of the body, turning and mobilization, visual training, and balance exercises. This app has been extremely helpful for stroke patients especially during COVID, when medical services were not as accessible, but we did not want to falter in patient care. It is still being used⁴.

A novel project in the country is the Neurology on Wheels program where treatment-inaccessible areas are approached in a bus equipped with medical facilities. It follows the motto, “We Reach, We Teach, We Treat” Upon reaching the remote areas, there is an awareness camp followed by a medical camp with distribution of free medicines. An extension of this is We Care, wherein patients with epilepsy are followed up remotely. This is done with the help of the village head who gathers the patients in one place and sets up a telecommunication link to the doctor who can then follow up with each patient. This ensures compliance and treatment satisfaction especially in a resource-poor setting by curbing expenditure from both ends.

Technology doesn’t need to be used in grandiose gestures to be of use to the people. Identifying problem statements and finding simple solutions goes a long way in bridging lapses in treatment. A resource-poor country does not imply that the whole nation is lacking. Technologically linking the better-off areas to help the lesser privileged sections doesn’t have to be a lofty feat. Once the key to unraveling the tangled ball of problems is in sight, it is only a matter of like-minded individuals putting smart and economic solutions to improve health care. •

Dr. Bindu Menon is professor and head of the department at Apollo Speciality Hospitals in Nellore, India, secretary general of the Indian Epilepsy Association, and president of Dr. Bindu Menon Foundation. Dr. Medha Menon is resident in internal medicine at the Kasturba Hospital Manipal, India, and treasurer of the Dr. Bindu Menon Foundation.

References:

1. https://www.who.int/news-room/fact-sheets/detail/epilepsy#:~:text=Key%20facts,%2D%20and%20middle%2Dincome%20countries
2. http://drbindumenon.com/epilepsyapp/
3. http://drbindumenon.com/teleawareness/
4. https://play.google.com/store/apps/details?id=appinventor.ai_bindumenon2013.StrokeHelp

Community education programs and the creation of the Neurology Postgraduate Program at the Universidad Nacional Autónoma de Honduras.

By Marco Tulio Medina, FAAN, FEAN

Neurological disorders are the leading cause of disability and the second leading cause of death both worldwide and in Honduras. Among these neurological disorders are cerebrovascular disease (or “derrames” in Honduran argot), Alzheimer’s disease, Parkinson’s disease, epilepsy, migraine, developmental disorders among others, which substantially affect the brain health of millions of human beings, including that of our fellow citizens.

In May 2022, the Assembly of the World Health Organization (WHO) approved the Global Intersectoral Action Plan (IGAP) for Epilepsy and other Neurological Disorders, so that between 2022 and 2031, the countries of the world can improve the approach to brain health through specific actions for prevention, treatment, rehabilitation, and palliative measures.

As highlighted in the recent scientific article led by Mayoba Owolabi and collaborators, global synergistic actions are required to improve brain health for human development. (The author’s team participated as co-authors and the article was published in 2023 in the British journal Nature Reviews Neurology.)

In Honduras, after a process of community intervention, we were able to reduce the frequency of a cerebral parasitosis, neurocysticercosis (incorrectly called “triquina” in Honduras), caused by fecal contamination by tapeworm or Taenia solium worms, in Salama, Olancho, through environmental sanitation measures and the educational campaign “the piggy is not to blame,” among others. Access to anti-epileptic drugs was also improved, thereby reducing the treatment gap.

The training of human resources has been another great challenge. The creation of the Neurology Postgraduate Program at the Universidad Nacional Autónoma de Honduras (UNAH), 25 years ago, has trained 37 neurologists and neurologists in our country to date. This postgraduate program had the support of the World Federation of Neurology (WFN), as well as the late U.S. professor, Ted Munsat, among many other national and international collaborators.

The creation of this postgraduate program had many detractors, who argued that there were not the necessary conditions in Honduras for its development, but despite these critics, the postgraduate course was certified worldwide for its high quality in 2006 by the WFN and named a WHO collaborating center for research and community intervention in epilepsy (HON01), thus supporting the Strategic Plan and action of the Pan American Health Organization (PAHO) between 2011 and 2022.

On Nov. 6, 2023, at UNAH, we had the presence of the Secretary-General of WFN, Prof. Steven Lewis, our mentor from the University of California at Los Angeles, Prof. Antonio V Delgado Escueta, with whom we have jointly published more than 40% of our indexed scientific papers and who has contributed a patent to UNAH, as well as the distinguished academic and dear Costa Rican friend Prof. Franz Chaves-Sell. Along with the university community, we celebrated a quarter of a century of advances in neurology and the foundation of his postgraduate program of excellence in our alma mater. •

Dr. Prof. Marco Tulio Medina is vice chancellor of International Relations at UNAH and past president of the Panamerican Federation of Neurological Societies.