Brain inflammation — known medically as encephalitis — remains one of medicine's most dangerous neurological emergencies. In a new invited Seminar published May 16 in The Lancet, Sarosh Irani, B.M., B.Ch., D.Phil., a Mayo Clinic neurologist and neuroimmunologist, outlines the latest advances in recognizing and treating both infectious and autoimmune forms of this serious condition. Here he explains what's driving this growing global threat, how new approaches are transforming diagnosis and treatment, and what it will take to improve outcomes for patients worldwide.

Encephalitis has been called an urgent global health threat. Why is this condition so important right now?

Encephalitis affects more than a million people worldwide each year and causes an estimated 100,000 deaths annually. The World Health Organization has described it as an "increasing global threat" and an urgent public health priority.

Some cases are infectious — triggered by viruses spread by mosquitoes or by re-emerging illnesses such as measles. Others are autoimmune, meaning the immune system mistakenly attacks the brain.

Over the past two decades we've learned that autoimmune forms are at least as common as infectious ones in developed countries. That represents a major shift in how we understand this disease.

What has changed in the way doctors diagnose encephalitis over the past decade?

Historically, encephalitis was thought to be almost entirely infectious. But we now recognize many autoimmune forms defined by specific antibodies targeting the brain. That has transformed diagnosis.

In our Lancet Seminar, we provide a practical clinical approach to help physicians quickly distinguish infectious from autoimmune causes. The goal is simple: help clinicians make the right call within the first 24 hours using the patient's history, brain imaging and spinal fluid testing.

Timing matters enormously. In herpes encephalitis, early antiviral treatment reduces mortality from roughly 70% to about 20%. In autoimmune encephalitis, our work has shown that even short delays in immunotherapy can worsen long-term outcomes.

By giving physicians a structured, bedside decision-making tool, we aim to reduce missed diagnoses and avoid unnecessary or inappropriate treatments. That's a direct example of Mayo Clinic's commitment to transform the practice — translating cutting-edge science into everyday clinical care.

Why is early spinal fluid testing so important?

Spinal fluid testing gives doctors a direct window into what is happening in the brain and is essential when serious inflammation is suspected. However, it is sometimes delayed because of concerns about complications.

We emphasize that, in most patients, early testing is safe and should not be postponed unnecessarily. Delays can mean lost time in starting antivirals or immune treatments — and in this condition, hours truly matter.

You describe emerging therapies, including targeted immune treatments and CAR-T approaches. Are we entering a new era of treatment?

Yes, that's exactly how I would describe it. Traditionally, we've used broad immune-suppressing medications for autoimmune encephalitis. These can work, but they affect many parts of the immune system and elsewhere, carrying multiple side effects.

Now we're seeing the development of more targeted therapies — including treatments that selectively remove harmful B cells or block specific immune pathways. Some experimental approaches are even designed to "reboot" the immune system in a precise way.

This aligns with Mayo Clinic's Precure vision. If we can understand what triggers the immune system to attack the brain in the first place, we move closer not just to treatment, but to prevention — and ultimately cure.

Your paper highlights patient-reported outcomes. Why is measuring recovery beyond survival so important?

Most patients now survive encephalitis. But survival is not the full story.

Many of our patients often experience long-term cognitive, emotional and physical challenges — including memory problems, fatigue, mood changes and difficulty returning to work or school. Traditional outcome scales, often borrowed from stroke care, do not fully capture these lasting effects.

Our team developed the first patient-reported outcome measure specifically for autoimmune cases. Listening directly to patients helps ensure we measure what truly matters and design treatments that improve quality of life — not just survival rates.

What are the biggest unanswered questions in this field today?

We still don't fully understand why autoimmune encephalitis begins. Identifying those triggers — genetic, environmental or infectious — is central to prevention.

Encephalitis costs an estimated $2 billion annually in U.S. hospitalizations alone, not counting long-term rehabilitation and caregiver burden.

The opportunity is enormous. Encephalitis is often called a "knife-edge" disease — devastating if missed, often reversible if caught early. We're bringing research, practical diagnostic tools and patient insights together to help doctors recognize it sooner, treat it more precisely and, ultimately, prevent it.

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COPD is a long-term lung disease that makes it hard to breathe after airways become inflamed and narrowed and mucus builds up. COPD can also make sleeping more difficult, affecting a patient's energy levels and overall health. These factors can influence participation in pulmonary rehabilitation, which includes a combination of exercise, education and support.

Researchers set out to understand whether a patient's sleep quality could help predict their level of participation in remote rehabilitation activities.

"As a scientist and engineer, I wanted to explore how wearable data could improve the drop-out rates of remote pulmonary rehabilitation programs. By better understanding a patient's day-to-day life, we can make more personalized and potentially more effective care plan recommendations," says Stephanie Zawada, Ph.D., M.S., a Mayo Clinic research associate and first author of the study. Dr. Zawada is committed to finding ways to use data to personalize care through her work on the team at the Kern Center for the Science of Health Care Delivery.

In the study, researchers found that using baseline sleep data from a wrist activity monitor, combined with machine learning and traditional clinical indicators, improved the prediction of how consistently patients would participate in a 12-week home pulmonary rehabilitation program.

The team analyzed already collected sleep measures, as part of a large study aimed to test a home-based program of pulmonary rehabilitation led by Roberto Benzo, M.D., M.S., and the Mindful Breathing Laboratory. Investigators generated a Composite Sleep Health Score before the home-based pulmonary rehabilitation began. At the end of the 12-week program, analysis showed that including the health score improved prediction of patient engagement over the study period.

This information can help clinicians better tailor rehabilitation programs and identify patients who may benefit from additional support. It also may inform the design of future remote-care programs.

"Adding wearable data provides a more comprehensive view of a patient's daily pattern," says Emma Fortune Ngufor, Ph.D., senior author of the study and a Mayo Clinic researcher in the Kern Center. She noted that sleep data is one of several inputs that can help inform care decisions, alongside clinical assessments and patient-reported information.

Researchers note that additional investigation is needed to validate and refine the model in broader patient populations before broader clinical application.

For a complete list of authors, disclosures and funding, review the study.

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About Mayo Clinic
Mayo Clinic is a nonprofit organization committed to innovation in clinical practice, education and research, and providing compassion, expertise and answers to everyone who needs healing. Visit the Mayo Clinic News Network for additional Mayo Clinic news.

Media contact:

• Terri Malloy, Mayo Clinic Communications, newsbureau@mayo.edu

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A recent Mayo Clinic study revealed how telehealth can be a powerful tool to enhance patient well-being when strategically applied in healthcare delivery.

The study showed that patients who received remote monitoring support after discharge did significantly better and needed less follow-up care compared to patients without remote monitoring. 

"This study explores the relationship between hospitals' implementation of telehealth services and the impact on patients' social needs," says Aaron Spaulding, Ph.D., a healthcare researcher at the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery and senior author of the study.  "The study aims to determine the effects on four key outcomes: better patient health, reduced hospital service use, lowered healthcare costs and enhanced community health."

The study also found that when patients used online therapy, they were much more likely to say their overall health in the community had improved compared to those who did not receive such services.

The study investigators say that the findings provide a closer look into telehealth's versatile ability to address social determinants of health and offer a path for future research into ways to enhance overall patient-centered care.

"There has been significant research identifying gaps in healthcare due to social determinants of health,"

says Dr. Spaulding. "The publication team has explored various avenues to understand the barriers to access and areas that inadvertently worsen outcomes related to social determinants."

Dr. Spaulding notes that telehealth, when combined with in-person visits, has the potential to help create a more integrated approach to healthcare delivery, but says that it should be treated as a complementary tool and that any approach needs to be personalized.

"Different patients require varying levels of care, and while our systems are improving, some patients may benefit from telehealth, while others may prefer in-person care," says Dr. Spaulding.  "Additionally, a combination of approaches might be beneficial for certain individuals."

Looking ahead, the researchers emphasize the need to continue focusing on strategically and thoughtfully deploying telehealth services in patient care.

"We must continue to assess the most effective ways to use telehealth to benefit patients," says Dr. Spaulding. "This evaluation should consider both hospital-specific outcomes, such as readmissions and emergency department visits, as well as patient experience and patient-reported outcomes."

Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic, Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery, collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the health and healthcare experience for patients, staff and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling safe, evidence-based, high-quality care.

The post Harnessing telehealth to enhance patient care appeared first on Mayo Clinic News Network.

A recent Mayo Clinic study has made a data-driven discovery for patients with heart failure in the intensive care unit.

Using machine learning, the researchers identified groups of patients with heart failure with higher and lower risk of mortality based on underlying patterns of laboratory values.

"The goal of this study was to explore different groups in the larger population of patients with heart failure admitted to the cardiac ICU," says Jacob Jentzer, M.D., a Kern Health Care Delivery Scholar and lead author of the study. "Recognizing that a critically ill heart failure patient belongs to one of these groups can help clinicians understand their likely underlying disease process and prognosis, allowing individualized therapy with the goal of improving outcomes."

Through the analysis, Dr. Jentzer and his colleagues identified five distinct groups, including patients with evidence of iron deficiency, kidney dysfunction, inflammation and poor blood flow. Each group had unique characteristics and risk profiles. Researchers underscore that by identifying these distinct groups, clinicians can craft treatment plans for each patient's needs and help to enhance outcomes and overall quality of care.

The groups in the study included:

• Uncomplicated: Patients generally had milder disease.
• Iron-deficient: Signs of iron deficiency, which can significantly impact heart function.
• Cardiorenal: Patients showed signs of kidney dysfunction, which is a common complication of severe heart failure.
• Inflamed: Patients revealed signs of significant inflammation.
• Hypoperfused: Patients showed signs of poor blood flow to vital organs, indicating more severe heart failure.

The findings revealed that the patients in the uncomplicated group generally had the best outcomes. In contrast, the patients in the inflamed, cardiorenal and iron-deficient groups all had an intermediate mortality risk.

Researchers note that patients in the hypoperfused group had the highest risk of mortality.

"The phenotypes and subgroups based on patterns of laboratory findings identified in this study have not been described before and could represent different noncardiac organ complications driven by different underlying biologic processes," says Dr. Jentzer. "This may help identify unique targeted therapies in a future study." 

Researchers underscore the influence of the Kern Health Care Delivery Scholars Program on researchers conducting studies such as this that impact the practice and seek to improve healthcare delivery. 

"The Kern Health Care Delivery Scholars program enables practicing clinicians, such as Dr. Jentzer, to dedicate time to learning healthcare delivery methods so they can approach clinical challenges in a novel way," says Shannon Dunlay, M.D., a heart failure cardiologist and senior author of the study. "The findings from this study can be used to identify personalized treatment strategies for patients with heart failure in the cardiac ICU."

Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling safe, evidence-based, high-quality care.

The post Enhancing care for heart failure patients through a data-driven approach appeared first on Mayo Clinic News Network.

A recent Mayo Clinic study highlights how a new debriefing tool is helping to improve the mental well-being of nurses.

The tool, which goes by the acronym BONE Break, is a structured approach designed to help address the emotional and psychological distress known as Second Victim Syndrome which can be experienced by people within healthcare teams.

"Second Victim Syndrome is the emotional toll that can occur after an adverse event in the hospital," says Amberly Hess, D.N.P., lead author of the study. "It's the feeling of guilt, self-blame and trauma that can arise when a healthcare worker is involved in or witnesses an adverse patient event."

To understand the debriefing tool's impact, researchers examined its use with registered nurses (RNs) in a 24-bed inpatient unit at Mayo Clinic over a nine-month time frame.

The BONE break tool is designed to be implemented within the first 30 minutes following an event, and to offer peer support and emotional processing to the nurses involved. The nurses who participated reported that they considered over 95% of the sessions helpful.

"One of the most significant insights we gained within the study was the difference between intellectualizing and emotionally processing what happens to us," says Hess.

"When I would run the BONE Break tool, I saw the physiologic changes in nurses," she adds. "I watched the shoulders relax and release tension."

Hess emphasizes that the Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery played a pivotal role in developing and evaluating the BONE Break tool.

"The Kern Center provided the framework and allowed the study to grow," says Hess.

"The nursing staff brought this study to the Kern Center and the collaboration was great," says Renaldo Blocker, Ph.D., a human factors engineering researcher and senior author of the study.

Dr. Blocker is a Robert D. and Patricia E. Kern Honored Investigator and leads a research team on cognitive engineering and neuroergonomics within the Kern Center.            

Researchers note that the nurses who participated were responsible for collecting data immediately following each BONE Break session, including the type of event, such as a patient fall.

The BONE Break debriefing process consisted of the following steps.

• Buoy/Break: Nurses took a silent break or short pause to allow for space, then reflected on the statement, "You are a good nurse working in a very complex environment." Peers then offered support using phrases such as "I cannot imagine what that must have been like for you. Can we talk about it?"
• Open-Up: The nurses then invited each other to talk about the event that had just occurred: "This has to be difficult. Are you OK?" and "How are you doing after the event?"
• Needs: Nurses assessed one another’s needs following the event: "What do you need right now to be able to be successful in returning to work?" They offered each other affirmations surrounding those needs: "I believe in you."
• Exit/Evaluate: Afterward, nurses discussed the effectiveness of the debriefing before returning to the floor.

"This study highlights the importance of practitioners and scientists working together to evaluate, assess and implement these formative tools," says Dr. Blocker.

Researchers hope to expand the debriefing tool to other healthcare teams.

"This is an easy tool to implement, and it takes just a couple of people to make it happen," says Hess. "If anybody's interested in enhancing the culture of their team, this is a good tool to have available."

Review the study for a complete list of authors, disclosures and funding.

About Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery

The Mayo Clinic Robert D. and Patricia E. Kern Center for the Science of Health Care Delivery collaborates with clinical areas across Mayo to create and evaluate data-driven solutions to transform the experience of health and healthcare for patients, staff and communities. It drives continuous improvement of Mayo Clinic as a learning health system, enabling safe, evidence-based, high-quality care.

The post New debriefing tool helps improve nurse well-being appeared first on Mayo Clinic News Network.

Billie, who has smoked most of his life, understands how using tobacco can negatively affect many aspects of a person's health. He is also a member of the Navajo Nation and has witnessed the challenges that family, friends and other members of his tribe have faced quitting tobacco. In recent years, he has watched the rising use of vaping among Navajo youth with concern. He wants to discourage young people from using tobacco except for ceremonial purposes.

"Science seeking to cure disease and transform the way we deliver healthcare requires a direct connection to the people we serve."

Annie Rusk, M.D.

Billie's experiences made him an ideal candidate to advise Dr. Rusk on her research through a Mayo Clinic program called Community Engagement (CE) Studios.

CE Studios is a consultation service that connects researchers to a group of "community experts" who represent the researcher's population of interest. These experts meet with the researcher, usually during a study's planning phase, to learn how the study is being designed, ask questions and provide feedback.

Since Mayo Clinic introduced CE Studios in 2021, Dr. Rusk has used it numerous times. She believes community input is essential for all research projects, regardless of their focus. 

"By involving people with lived experiences, we can gain valuable insights and ensure our research is relevant and impactful," says Dr. Rusk. "Even discovery science projects taking place in a lab can benefit from community perspectives."

Lived experiences provide key insights

For the CE Studios session with Dr. Rusk, Billie joined three other community experts from tribes in the Midwest, Alaska and Canada in a virtual meeting. The four community experts were there to advise Dr. Rusk on a new clinical trial.

Kory Billie, a member of the Navajo Nation from Phoenix, wants to discourage youth in his community from using tobacco, except for ceremonial purposes.

Dr. Rusk's research focuses on understanding barriers to smoking cessation among Native Americans. She felt it was important to consult with people from a variety of Indigenous communities to ensure her research aligned with their community health needs and priorities.

Billie says he enjoyed this opportunity to connect with like-minded people from similar backgrounds, and to speak with Dr. Rusk about how tobacco use was affecting communities like his. He shared his experiences with homelessness and addiction, as well as the difficulty of accessing smoking cessation resources in Indian Country.

What Dr. Rusk learned from Billie and the other community experts during the CE Studios session motivated her to make an important change to her study design.

The elements of the study that resonated best with the community experts were those geared toward developing practical behavioral health interventions. Billie and the other experts emphasized that understanding the social and cultural drivers of smoking would be key to achieving meaningful outcomes.  "You have to understand a person's environment and the way they're brought up," says Billie.

The community experts were less keen on a genetic analysis component Dr. Rusk had planned to include. They felt this aspect did not align meaningfully with community health priorities. Based on this feedback, Dr. Rusk eliminated this component from her study. 

While incorporating this kind of feedback can be challenging, Dr. Rusk says the long-term benefits are worth it for all.

"Science seeking to cure disease and transform the way we deliver healthcare requires a direct connection to the people we serve," she says.

Health is a blessing

Billie says he appreciated this chance to participate in CE Studios. He hopes that the knowledge he and the other experts shared will give Dr. Rusk the context she needs to develop a tobacco intervention that will have a lasting impact. Upon completion of the study, he looks forward to hearing from her to see the results.

Billie encourages other people to consider participating in CE Studios to help advance research to improve the health of their communities. He connects his motivation for this work to a Navajo proverb that reminds his people to live their lives with purpose: "Remember to walk in beauty. Beauty before you and beauty behind you."

If the community can improve the health of its people today, Billie says, they will pass that blessing on to future generations.

Get involved in CE Studios

A CE Studios community expert can be a person with any type of lived experience. Experts receive a small honorarium in exchange for their time. People interested in joining Mayo Clinic’s database of community experts should complete a Community Expert Enrollment Form.  

Mayo Clinic Community Engaged Research

Learn more about community outreach and engagement and community-engaged research at Mayo Clinic.

This work is supported by Mayo Clinic Center for Clinical and Translational Science and by Mayo Clinic Comprehensive Cancer Center.

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A study published in Menopause provides a comprehensive overview of the most common conditions diagnosed in clinical practice among women in the U.S. Upper Midwest during their critical midlife transition.

Overall, eight conditions increased by 45% or more between the ages of 40 and 59, and several conditions were more common in Black women and women living in more socioeconomically deprived neighborhoods.

Jennifer St. Sauver, Ph.D., the study's first author and professor of epidemiology at Mayo Clinic, says that the health of women in midlife is understudied, and comprehensive data about women between the ages of 40 and 59 are lacking.

"Most studies examine men and women together. However, we know that men and women age differently, so it's important to do separate studies to understand these differences," she explains.

Researchers know that hypertension and high cholesterol increase rapidly in both men and women during midlife. However, in this study, the researchers were surprised to see such a significant increase in sleep disorders, acid reflux and conditions related to joint and muscle pain in midlife women, according to Dr. St. Sauver.

Together, these data provide a picture of the most common health conditions that come to medical attention in midlife women and the most rapidly increasing, medically diagnosed conditions during the menopause transition.

Key findings

Eight conditions became significantly more common and increased in women during midlife (ages 40-59).

• Disorders of lipid metabolism (high cholesterol)
• Hypertension (high blood pressure)
• Sleep/wake disorders
• Thyroid disorders
• Esophageal disorders (especially acid reflux)
• Osteoarthritis (joint wear and tear)
• Tendon and synovial disorders (problems with joints and connective tissues)
• Menopausal disorders (especially hot flashes)

Black women and women living in socioeconomically deprived neighborhoods were more likely to have many of these conditions. Black women were more likely to have high blood pressure and esophageal disorders (especially acid reflux) compared to white women across all age groups. Women living in more deprived neighborhoods had a significantly higher prevalence of high cholesterol, high blood pressure, sleep disorders and esophageal disorders.

"Our data provide a comprehensive picture of the most common conditions coming to medical attention in midlife women. They are useful for understanding common diagnoses in women during the menopause transition and suggest that additional attention should be focused on Black women and women with lower socioeconomic status to ensure that common midlife conditions are identified and addressed," says women's health researcher and coauthor Stephanie Faubion, M.D., Mayo Clinic in Florida.

The findings also underscore the need for increased research to understand underlying biological changes in women at midlife and how these changes contribute to the development of many conditions throughout the aging process. Such research may suggest future treatments that could be beneficial for multiple conditions. In addition, the findings highlight the need for increased attention to the health needs of Black women and women with lower socioeconomic status to ensure early diagnosis and treatment of common midlife health conditions.

The study used data from the Rochester Epidemiology Project in Minnesota, including medical records from approximately 1.4 million people in the Upper Midwest. Researchers analyzed data from 86,946 women between the ages of 40 and 59. They examined diagnoses recorded in electronic health records between 2016 and 2019.

Review the study for a complete list of authors, disclosures and funding.

Related: Managing menopause symptoms

The post 8 common health conditions midlife women face appeared first on Mayo Clinic News Network.

A new study has revealed a significant link between a common pregnancy complication and early heart disease in women.

Researchers found that women with a history of hypertensive disorders of pregnancy (HDP) were at higher risk of developing coronary artery disease at an earlier age. In addition, they found that women with these disorders were at higher risk of myocardial infarction with non-obstructive coronary arteries (MINOCA) — heart attacks that occur when the coronary arteries appear normal. 

Hypertensive disorders of pregnancy (HDP) — such as gestational hypertension, chronic hypertension and preeclampsia — affect 15% of women during their reproductive years. Marked by high blood pressure, the effects of these disorders continue to impact the health of mothers and babies well after pregnancy.

Compared to women with a history of normotensive (normal blood pressure) pregnancies, women in this study with a history of HDP were at greater risk for:

• Early onset of coronary artery disease: Occurring on average seven years earlier among women with a history of HDP.
• More severe atherosclerotic coronary artery disease: Twice as likely among women with a history of HDP.
• Increased risk of MINOCA: Twice as likely among women with a history of HDP.

"This research highlights the need for earlier screening for heart disease among women with a history of high blood pressure in pregnancy, particularly for MINOCA, which is up to five times more common in women than in men," says Vesna Garovic, M.D., Ph.D., a Mayo Clinic nephrologist and senior author of the study.

To improve patient care and outcomes for women, the researchers say clinicians should not only screen for traditional coronary artery disease risk factors, but they should also screen for non-traditional risk factors associated with MINOCA and other non-obstructive types of coronary artery disease, such as stress, autoimmune diseases — and now, HDP.

How does high blood pressure in pregnancy lead to coronary artery disease?

According to the researchers, there are two related types of small vessel heart disease that may make it more likely for women to develop HDP and coronary artery disease:

1. Microvascular dysfunction: Women with a history of HDP often have this underlying problem, which occurs when the small blood vessels that feed the heart stop working as they should, decreasing blood flow to the heart.
2. Endothelial dysfunction: This is a problem common to both HDP and coronary artery disease. It occurs when the cells that line the inside of blood vessels malfunction, narrowing instead of dilating.

Together, these dysfunctions clog or narrow the arteries and small blood vessels that supply blood to the heart, which can lead to coronary artery disease without any physical blockage (non-obstructive). The researchers think it's possible that these processes may feed on one another, creating an environment where coronary artery disease is more likely to occur.

Further research, including large prospective studies, are needed to understand the mechanisms linking HDP to coronary artery disease, such as specific biomarkers and genetic factors that contribute to increased risk.

Read the paper to learn more about the study, including funding and disclosures.

A growing body of research on high blood pressure in pregnancy

Research led by Dr. Garovic, a Mayo Clinic nephrologist, has shown links between HDP and a greater risk for a wide range of health concerns including:

• Atherosclerosis and stroke
• Renal disease
• Brain cell damage and inflammation
• Accelerated aging and the markers of cellular senescence
• Early-onset hypertension in children

The overall goal of Dr. Garovic's research is to increase understanding of the causes and mechanisms that play a role in the process that leads to HDP. The potential to identify targeted therapies that address the underlying causes of disease may improve treatment options for diseases, such as preeclampsia, that have seen few therapeutic advances in recent decades.

Related:
Mothers with history of pre-eclampsia may encounter cardiovascular challenges later in life

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There is new hope in the fight against glioblastoma, the deadliest and most aggressive form of primary brain cancer.

Currently there is no cure, but results of a new study conducted at Mayo Clinic show patients experienced improved overall survival while maintaining quality of life after undergoing a novel approach to treatment.

Watch: Breakthrough in the fight against glioblastoma

Journalists: Broadcast-quality video (2:45) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Richard Casper was one of the study participants. The Arizona man enrolled in the clinical trial at Mayo Clinic in Phoenix after his diagnosis of glioblastoma in 2019. Richard was given only months to live, but his family says thanks to his strength, perseverance, and innovative medical care, he survived nearly double the amount of time.

"To be almost two and a half, three years in after being told you only have a few months, it's quite remarkable," says Susan Casper, Richard's daughter.

Richard succumbed to the disease in 2023. During the treatment, his family says he had little to no side effects. In the months before his passing, Richard stated, "I feel great. If someone didn't tell me I have the glioblastoma, I wouldn't even know it."

The clinical trial was led by Dr. Sujay Vora, a radiation oncologist at Mayo Clinic in Arizona. The small, single-arm study incorporated the use of advanced imaging technology combined with cutting-edge radiation therapy in patients over the age of 65 with newly diagnosed World Health Organization (WHO) grade 4 malignant glioblastoma.

"The patients lived longer than we expected. This patient population is expected to live six to nine months. Our average survival was 13.1 months. There were some patients that were out closer to two years. The results exceeded our expectations. We are very pleased," says Dr. Vora.

The study is published in The Lancet Oncology.

Why is glioblastoma so deadly?

Glioblastoma is among the most challenging cancers to treat. The disease is aggressive and invades healthy brain tissue with hairlike tentacles. "That is why doing a complete surgery is very difficult, as compared to say breast cancer, where a lumpectomy can be performed to remove not only the tumor, but a healthy rim of tissue around it," explains Dr. Vora.

Surgery for glioblastoma presents a different set of obstacles. "When it comes to glioblastoma, it is challenging to do that level of surgery. You try to surgically remove whatever you can safely without leaving the patient worse off after surgery."

Another factor that makes glioblastoma so lethal is that it can be fast- growing and unresponsive to treatment.

"These cancer cells are quite challenging to overcome," says Dr. Vora. "There are some patients we see after their surgery, and by the time we are ready to start their treatment, they've already had a recurrence of the disease."

An estimated 14,500 people will be diagnosed with glioblastoma in the U.S this year. "In the best of circumstances the average survival rates are in the 14-15 month range. But for patients 65 and older, the group that was the focus of our study, patients do even worse. The prognosis for this population is between six and nine months," says Dr. Vora.

Symptoms of glioblastoma

• Headache
• Nausea and vomiting
• Confusion or decline in brain function
• Memory loss
• Personality changes
• Vision changes
• Speech difficulties
• Trouble with balance
• Muscle weakness
• Seizures

Attacking glioblastoma with a triad

For the clinical trial, Dr. Vora and his team mapped out a plan that would allow them to be more intentional and precise with treating the location of the glioblastoma.

The imaging incorporated the use of ¹⁸F-DOPA PET and contrast-enhanced MRI. "¹⁸F-DOPA PET is an amino acid tracer that can cross the blood brain barrier, and it can accumulate within the glioblastoma cells itself," says Dr. Vora.

Researchers combined these images to determine the location of the most metabolically active "hot spots" of the cancer in the brain.

Taking aim with proton beam therapy

Study investigators used one of the most advanced forms of radiation treatment, called proton beam therapy.

"With standard radiation, the beams go through the brain tissue, so there's an entrance dose and the exit dose. But with proton beam therapy, we dial up how deeply we want the radiation to go," explains Dr. Vora. "It drops off its energy in the tumor, and then there's basically no radiation after that. It allows us to be more preferential into the delivery of radiation and protect more of the healthy surrounding tissue."

During proton beam therapy, a patient lies on a table while the machine rotates around the patient's head targeting the tumor with an invisible beam. The patient is awake for the procedure. It is painless with many patients reporting fewer to no side effects.

Unlike traditional radiation for glioblastoma, which is typically delivered over the course of three to six weeks, treatment with proton beam therapy for the study was conducted in one to two weeks.

"I am hopeful that this is the first step of many where we can continue to move the needle and allow patients to live longer and live well," says Dr. Vora. "The goal is to improve the outcomes for our patients allowing them to spend more time with their families."

Nadya's story

2022 was a tough year for Nadya El-Afandi. She was on the verge of celebrating a long but successful battle with breast cancer.

"Out of the blue, I had a seizure. I went to the hospital, they did an MRI. After additional tests they told me the news: 'You have a glioblastoma,'" recalls Nadya. She asked her doctor if she should continue her breast cancer treatment. "He said, 'No'-meaning the glioblastoma would kill me before the breast cancer."

Nadya was not about to give up.

Nadya is a wife and mother of four children. She lives just outside of Rochester, Minnesota. "My children said to me, 'Mom, you're a unicorn. Of course you'll live.' My mother has had a number of medical conditions and we never expected her to live this long. And she's still alive and with us," says Nadya. "My children have also said, 'You've got grandma's blood in you. You will live.'"

Nadya is receiving care at Mayo Clinic in Rochester. That's where she learned about a new clinical trial called SAGA, or stereotactic ablative radiation treatment for glioblastoma. The phase 2 clinical trial is building upon Dr. Vora's research and studying a larger group of patients. The study is being led by Dr. William Breen, radiation oncologist at Mayo Clinic in Rochester.

It has been 15 months since Nadya began treatment for glioblastoma. So far, there is no sign the glioblastoma has returned. "Nadya has already exceeded the time that's expected time to have a tumor recurrence, and she continues to do well," says Dr. Breen. "Nadya is beyond some measures of what the average, overall survival time would be."

While Nadya's progress in encouraging, Dr. Breen says it is important to note that it is too early to draw any conclusions about safety or efficacy of this approach to treatment until the study is completed.

Meanwhile, Nadya is focused on living her life to the fullest. Fifteen months after undergoing treatment, Nadya embarked on an adventure to Hawaii, where she spent time taking helicopter tours, snorkeling and hiking.

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• https://cancerblog.mayoclinic.org/2021/12/21/glioblastoma-in-older-adults-improving-survival-and-quality-of-life/
• https://cancerblog.mayoclinic.org/2024/05/15/technology-clinical-trials-offer-hope-after-glioma-diagnosis/

The post (VIDEO) Breakthrough in the fight against glioblastoma appeared first on Mayo Clinic News Network.

At 20 years old, Brescia Dover was ready to take on the world.

She was on her way to achieving her dream of being a professional photographer.

Everything was going according to plan when her dream came to a halt. Brescia was diagnosed with cancer. With her plans for her future pushed aside, Brescia's focus was now on her health and hope.

It's an unexpected chapter facing an increasing number of adolescents and young adults diagnosed with cancer.

Watch: Focus on hope: Brescia's Story

Journalists: Broadcast-quality video (2:31) is in the downloads at the end of this post. Please courtesy: "Mayo Clinic News Network." Read the script.

Brescia's dream

At 4 years old, it was clear Brescia Dover had a flare for creativity. She readily admits she was never one to miss an opportunity to play dress-up, draw pictures, or tell a story.

"Being creative has always been at the core of what I do," she says. Early on she developed a love for photography and videography. Brescia's dream was to pursue a career that allowed her to put her creative energy to work.

After high school Brescia's passion led her to college to study film and media production. She even traveled to Italy to study abroad. After her Italian adventure, Brescia returned to the U.S. to finish college. First, she went to her doctor for her annual checkup.

"I lived a really healthy, balanced lifestyle," says Brescia. "My doctor found swelling on the side of my neck. I hadn't noticed the swelling and didn't have any symptoms." Brescia was sent for an ultrasound followed by a surgical biopsy.

The diagnosis - cancer

The surgical biopsy revealed Brescia had Hodgkin lymphoma, a rare type of blood cancer. "Being diagnosed with cancer at 20 years old was so scary and I wouldn't wish that on any 20-year-old," says Brescia. "I think about the young version of me who just found out she had cancer, and I just wish I could give her a hug."

Hodgkin lymphoma is a type of cancer that begins in the lymphatic system, which is part of the immune system. Brescia says the news came as a shock because she felt healthy and had no family history of cancer. "It felt like there was something I could have done to prevent it, but I learned that there's nothing I could have done," says Brescia.

Being a young adult with cancer

"When I was going through college and diagnosed with cancer it was not what I was expecting," says Brescia. "Being a young adult with cancer was very hard and challenging. It is scary and can be very frightening."

At 20 years old, Brescia falls into a group of patients referred to as adolescents and young adults with cancer. AYA patients are between the ages of 15 and 39. Experts says AYA patients face a distinct set of challenges.

"One of the reasons this age group is so important is based on their life stage; the things they uniquely face, like body image, disruption in school and work, financial challenges, feeling isolation," says Dr. Allison Rosenthal, with the Mayo Clinic Comprehensive Cancer Center.

Doctor and cancer survivor

Dr. Rosenthal knows firsthand the challenges AYA patients face. She was diagnosed with leukemia during medical school. "I had leukemia in medical school. There were a lot of missed opportunities in my care to recognize the issues that I might face as a 24-year-old woman," explains Dr. Rosenthal.

Putting her experience into action, Dr. Rosenthal championed Mayo Clinic's Adolescent and Young Adults with Cancer program. The program is tailored to meet the unique needs of AYA patients to include medical care, fertility concerns, social and relationship issues, school and work concerns, and the personal and emotional impact of cancer in this age group.

Brescia underwent about four months of chemotherapy treatment under the care of Dr. Rosenthal. "She did a beautiful job of explaining to me what the process was going to look like and what my treatment plan was going to look like. Because I'm so young, she walked me through the whole process," says Brescia.

Cancer-free and focused on the future

After her cancer treatments, Brescia returned to college and got her degree. She the started her own marketing agency providing social media management, videography, photography, and brand development with her personal creative touch. She also celebrated her five-year anniversary of being cancer-free.

"I also have a podcast called the Checkered Jaguar where I get to have incredible conversations with people, share their stories and connect people who may be going through similar challenges that I went through," says Brescia. "We're all in this journey together and just being open and vulnerable with my journey, as challenging as it may be, I feel like it connects me to people all around the world."

If you are someone you know would like to learn more about the Mayo Clinic Adolescent and Young Adults with Cancer Program please click this link or email us at arzayacancerprg@mayo.edu. You can also reach us at 480-574-1341.

Related articles:

• Mayo Clinic Cancer Center launches program for adolescents and young adults
• Meeting the unique needs of adolescents and young adults with cancer
• Adolescent & Young Adult (AYA) Cancer Support Group
• All-Star pitcher Liam Hendriks shares how he closed out cancer at Mayo Clinic in Arizona
• Cancer is tough. Evelyn Owens is tougher
• (VIDEO) Harnessing the power of innovation and a patient’s will to survive
• Jessie’s Journey

The post (VIDEO) Focus on hope: Brescia’s Story appeared first on Mayo Clinic News Network.