High Rates of Body Image Dissatisfaction Shown in Patients With Epilepsy

Article published by AJMC

Body image dissatisfaction, a marker for reduced quality of life (QOL), showed elevated levels of prevalence among adults with epilepsy, according to study findings published in Epilepsy & Behavior.

As a known risk factor for reduced QOL, epilepsy and its treatments have been shown to cause physical changes in patients (e.g., skin rashes, unwanted weight changes) that can then lead to detrimental physiological outcomes such as embarrassment, self-consciousness, and body dysmorphia.

“Although related to self-esteem, body image chiefly concerns how we subjectively see our physical bodies—good and bad. Body image dissatisfaction comprises unhappy, unrealistic, and maladaptive evaluations of one’s appearance, and in the general population is associated with a host of adverse emotional outcomes,” said the study authors.

“Together, these physical aspects of epilepsy and its treatment could reasonably be speculated to undermine the body image of people with the disease, yet to date, there has been no such empirical investigation.”

Researchers conducted a prospective analysis of patients with and without epilepsy to further examine the adverse impact of body image dissatisfaction. A total of 63 adults with epilepsy and 48 age- and gender-matched healthy controls were recruited for the analysis from a tertiary epilepsy program at Austin Health, Melbourne, as well as from newsletters and social media.

Participants were assessed via an online survey that examined self-reported demographic and medical information and the following psychological measures: trait (long-term) body image dissatisfaction, state (current) body image dissatisfaction, body image impact from epilepsy, mood, and QOL.

Between-group analyses were conducted to compare measures of body image dissatisfaction, as well as clinical and psychosocial factors. The associations between rates of body image dissatisfaction and depression scores, QOL, and epilepsy-related factors were also examined.

Caregiver Burden and COVID-19: How Epilepsy Caregivers Experienced the Pandemic

Abstract found on PubMed

Introduction: Caregivers of adults with epilepsy face unique challenges, yet most studies focus on the impact of epilepsy on those living with the condition, rather than the impact on caregivers. Our objective was to evaluate whether caregivers’ pandemic-related changes and experiences – namely those related to their health, healthcare access, and well-being – were associated with their caregiving burden.

Methods: Caregivers of adults with epilepsy (n = 261) were recruited through Qualtrics Panels to participate in an online survey examining health, well-being, COVID-19 experiences, and caregiver burden from October-December, 2020. The burden was measured using the Zarit 12-item measure; the clinically significant burden was defined as a score greater than 16. Adjustments were made to account for burden scores related to exposures of interest. Chi-square tests, t-tests, and generalized linear regression models were used to compare cross-sectional associations between COVID-19 experiences and burden.

Results: Over half (57.9%) of caregivers had clinically significant caregiver burden. Most reported increased anxiety (65%), stress (64%), and sense of social isolation (58%) during the pandemic. Many caregivers reported that their sense of control over their life (44%) and their use of healthcare changed (88%) due to COVID-19. In adjusted models, caregivers who reported increased anger, increased anxiety, decreased sense of control, or changes in healthcare utilization during COVID-19 had about twice the odds of having clinically significant caregiver burden compared to caregivers who did not report changes.

Discussion: Changes experienced by caregivers of adults with epilepsy during the pandemic were strongly associated with clinically significant levels of caregiver burden. These findings demonstrate the link between mass-level events, such as a pandemic, the burden caregivers of adults with epilepsy may carry, and subsequent psychological outcomes.

Conclusion: Caregivers of adults with epilepsy may need support to reduce the negative impact of COVID-19-related experiences and should be connected to healthcare and resources that can help alleviate their burden.

CURE Epilepsy Update March 2023

Greetings Epilepsy Community,

As CURE Epilepsy continues to celebrate our 25th anniversary, I’m reminded again of how far we have come as a community, how we have advanced our understanding of the brain, and how much closer we are to cures. This anniversary has given us a wonderful opportunity to look back on our accomplishments over the years and share with you the impact that your support and donations have made. We will continue to share stories of impact with you in our monthly Discovery emails, in our webinars, and on social media.

If you will indulge me for a moment, I would like to call out the amazing team at CURE Epilepsy that drives this impact on behalf of our community to get us to a world without seizures. By the time you read this, Employee Appreciation Day on March 3rd will have passed, but I have the privilege of working with the most amazing, dedicated team of scientists, fundraisers, communications professionals, and support staff that any leader could ask for. The CURE Epilepsy staff is deeply committed to driving our mission, ensuring that we steward every dollar donated by the community. For those of you who have had the opportunity to interact with these wonderful people, I hope that you share my sentiment.

And if you haven’t had a chance to meet the team, we hope to see you at CURE Epilepsy or community events throughout the year, whether that be at our 25th Anniversary Gala in Chicago this May, at the Purple Day® Expo in Florida later this month, or at one of the many CURE Epilepsy champion events held in your communities

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:


Tickets Now Available for our 25th Anniversary Gala in Chicago

Get your tickets today for our 25th Anniversary Gala in Chicago to be held on Saturday, May 6 at the Sheraton Grand Chicago Riverwalk. Join us in celebrating 25 years of inspiring hope and delivering impact and help us raise money to continue funding innovative epilepsy research.

 

 

 

Get Tickets


Take Our Important Community Survey Before it Closes

As we celebrate our 25th anniversary this year, we are looking ahead to continued progress in finding cures for epilepsy. To make sure we are meeting your needs at this organizational milestone, we are conducting a community survey to inform our 5-year strategic planning process. We want to better understand your interests and needs, our organizational strengths and weaknesses, and how we can better serve and communicate with the broader epilepsy community.

The deadline to submit your feedback is today at 11:59pm CST. We appreciate you sharing your thoughts and helping ensure that CURE Epilepsy incorporates feedback from individuals living with epilepsy, their loved ones, caregivers, epilepsy researchers, and clinicians in the community. If you have any difficulties accessing or completing the survey, please email dana.vielmetti@cureepilepsy.org.

 

Take Survey Now


CURE Epilepsy Discovery: Implantable Devices Represent a Novel Way to Detect and Treat Epilepsy

Implantable epilepsy devices offer novel avenues to detect and treat seizures by recording seizure activity from neurons (brain cells) in high resolution and stimulating these neurons in a way that halts seizures. In this latest CURE Epilepsy Discovery, we highlight Brian Litt at the University of Pennsylvania who was funded by CURE Epilepsy in 2011, and whose work has led to the development of electrodes and technology that offer incredible precision in recording from and stimulating neurons.

Read Discovery

 


Paws for a Cause Awareness Event

Join Miami University’s PAWS for a Cause student organization for a hybrid (live + virtual), educational event featuring people living with epilepsy and family members sharing their experiences with service dogs. CURE Epilepsy’s CEO, Beth Lewin Dean, will also speak briefly about epilepsy and our organization.

 

Learn More

 


Watch Our Webinar: Cutting-Edge Technologies for Treating Nano-Rare Epilepsies

Did you miss our January webinar? Don’t worry, you can now watch the recording or read the transcript on our website! This webinar discusses the use of individualized antisense oligonucleotide (ASO) treatments for patients with nano-rare epilepsies. ASOs are short strands of modified deoxyribonucleic acids (DNA) that can be developed rapidly and inexpensively and can specifically target and potentially halt the development of disease-causing proteins, thus attempting to change the course of the disease.

 

Watch


Register for Our Upcoming Webinar: The Role of Medicinal Cannabis and Cannabidiol in the Treatment of Epilepsy

Our next webinar will take place on Wednesday, March 29 at 2 pm ET and will review the basics of cannabis biology and the differences between cannabis strains, as well as explain the medical uses of medical marijuana and the recent approval of CBD to treat specific types of epilepsy. Thank you to Jazz Pharmaceuticals for their generous support of this webinar. Stay tuned for more information.

 

Register


Fox 11 Los Angeles Speaks with CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers

 

CURE Epilepsy’s Chief Scientific Officer, Dr. Laura Lubbers, spoke with Fox 11 Los Angeles last week on their segment aimed at raising awareness of epilepsy, Sudden Unexpected Death in Epilepsy (SUDEP), and infantile spasms. Additional guests on the segment include CURE Epilepsy community member Francesca Calloway, mother of a child with epilepsy, and an Associate Clinical Professor of Pediatrics at UCLA, Dr. Shaun Hussain.

 

Watch


 

Visit CURE Epilepsy at the 4th Annual Purple Day® for Epilepsy Awareness Around the World Expo

 

The Purple Day® for Epilepsy Awareness Around the World Expo is taking place Saturday, March 25, 2023, from 8:15 am-5 pm ET at Disney’s Contemporary Resort in Florida. Programming is specifically designed for patients and caregivers living with epilepsy as a shared opportunity to meet, engage, and be inspired to increase epilepsy awareness in their own community. In addition, patients and caregivers can explore the expo and learn more about the services and support available to them. CURE Epilepsy will present the Purple Day® Talk session “CURE Epilepsy’s Research & Response to the Rare Epilepsy Community” during the expo. Be sure to stop by our booth and say hi!

 

Learn More


 

Mind Your Brain Conference at Penn Medicine

 

Register today for The Mind Your Brain conference (which can be attended in person or virtually). This conference is focused on Traumatic Brain Injury (TBI) survivors, families and friends and is designed to share research, insights, therapies and other useful information with attendees, and also provide a forum for attendees to interact and connect with others affected by a brain injury.

 

Register


 

What’s New from the Seizing Life® Podcast

After Decades of Seizures, an Epilepsy Diagnosis Begins to Provide Answers

 

Carmen Zannier shares her 35-year epilepsy journey, discusses her recent decision to go public with her diagnosis, and explains how her passion for mountain climbing has led her to raising funds for epilepsy research.

 

Watch or Listen

 

 

Epilepsy Can’t Stop Young Girl’s Competitive Spirit

 

When it became clear that Christiane needed special attention and considerations in her training program, her father decided to become her coach. Despite experiencing seizures before races, Christiane has continued to compete at the highest level, making it to the final round of the 2021 Junior Olympics in the 100-meter dash. Even as they struggle to control Christiane’s seizures, her parents continue to support and encourage Christiane’s passion for running, and Christiane’s competitive spirit remains intact as she looks forward to the next Junior Olympic trials.

Watch or Listen

 

Watch these and all of our upcoming Seizing Life episodes here.


The CURE Epilepsy Store

 

Need apparel or accessories to raise epilepsy awareness? Check out the CURE Epilepsy Store!

 

 

 

 

Shop


Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • March 25 – Purple Day® Expo at Disney World
  • March 26 – Purple Day®
  • October 18 – SUDEP Action Day
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week

 

1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Michael’s Story

 

Michael Platt: Making the World a Better Place One Dessert at a Time

In support of Black History Month, we are highlighting some of the many Black individuals who are making a meaningful impact within the epilepsy community. Today, we want to share the inspirational story of Michael Platt, a teenage business owner, social entrepreneur, food justice advocate, and baker.

Michael had been an extremely active child, participating in gymnastics and swimming in addition to the “typical” childhood activities of riding his bike and climbing trees until he was diagnosed with epilepsy in fifth grade. When he was diagnosed, he was instructed to limit physical activity and his parents pulled him out of school to homeschool him. With his days entirely different than before and unable to enjoy his normal activities, Michael turned to baking which he had started to fall in love with after baking cakes with his grandmother. 

Since Michael was raised in a home of educators and advocates, he already had the drive to challenge injustice. When Michael was gifted a pair of TOMS shoes for Christmas, he was moved to create a baking business, Michaels Desserts, with a similar 1-for-1 model. For each dessert purchased, Michael gives a dessert to someone in need. Michael passes out his cupcakes at homeless shelters and domestic abuse shelters, and partners with other nonprofits focused on addressing food inequity. 

Michael recently released a cookbook, Michaels Desserts: Sweets for a Cause, that includes dessert recipes designed around inspirational social justice leaders and activists including Martin Luther King Jr., Harriet Tubman, and more. CURE Epilepsy is honored to have Michael as part of our epilepsy community. He is working to make the world a better place, one dessert at a time. 

Project ECHO Telementoring Program in Epilepsy for School Nurses

Abstract found on PubMed

Objectives: Many children with epilepsy experience seizures at school. School nurses must have the clinical expertise to deliver high-quality, safe care for students with epilepsy. However, in some regions of the U.S. access to interactive, epilepsy evidence-based education programs is limited. The objective of this project was to assess the feasibility of adapting the Epilepsy Foundation’s (EFs) school nurse education program to the ECHO model and evaluate its impact on school nurse knowledge and self-efficacy in managing epilepsy in students with seizures and program satisfaction.

Methods: The EFs educational program for school nurses was adapted to the ECHO model and delivered by a team of interdisciplinary epilepsy specialists via videoconferencing. Retrospective post-program surveys were administered at program completion. Data from 32 participants with complete post-program surveys were used for the analysis of knowledge and confidence. Descriptive statistics and the sign test were conducted.

Results: Participants were 166 school nurses from 13 states. The majority had > 15 years of school nurse experience and served schools in suburban or rural areas. Improvements in knowledge and confidence were reported on most survey items. The highest improvements in self-reported knowledge and confidence were in psychosocial aspects of care, comorbidities, and recognition of nonepileptic events. Program satisfaction was rated as high by over 90% of participants.

Conclusions: Telementoring using the ECHO methodology is a feasible modality to educate and link epilepsy specialists and providers with school nurses nationwide. Findings suggest that attending the MSS ECHO provided an educational and meaningful learning experience. The gains in knowledge and confidence in psychosocial aspects of epilepsy care and comorbidities highlight the importance of the inclusion of this content in educational programs.

CURE Epilepsy Update February 2023

Greetings Epilepsy Community,

February has arrived, and as we approach International Epilepsy Day and Valentine’s Day next week, I think of the incredible love and support that exists in the epilepsy community across the world. Each of you plays a vital role in our mission as you help to inspire us and deepen our drive to find a cure. Without you, our work would not be possible, and we would be that much further from a cure for epilepsy.

February is also Black History Month. This month, CURE Epilepsy is highlighting some of the many Black individuals who are making a meaningful impact within the epilepsy community. We started this week by spotlighting Sherri Brady, whose daughter, Lauren, was diagnosed with Rett syndrome as a young child and who has now blossomed into a wonderful young woman. Sherri has dedicated her life to not only taking care of Lauren, but also helping and advocating for others within the Rett syndrome and epilepsy communities. Click here to read Sherri’s remarkable story and stay tuned to our social channels to see who we spotlight next.

Lastly, as we look back at what CURE Epilepsy has accomplished over the past 25 years, we are also looking forward. As we map out our plan for the future, it is essential that we understand what is important to people with epilepsy, parents and caregivers, researchers, and everyone else who engages with the community. In the coming weeks, you will see an email invitation to participate in a short survey. I would be incredibly grateful if you could take 15 minutes out of your day and share your thoughts with us.

With a commitment to inspire hope and deliver impact.


In this CURE Epilepsy Update, please find information on:


$6,500 for the 65 Million for International Epilepsy Day

International Epilepsy Day is right around the corner, and we need your help! CURE Epilepsy is working to raise $6,500 to fund research for the 65 million people worldwide who need a cure for epilepsy. Donate today and make a difference in the lives of those desperate for a cure.

 

 

 

Donate Today


Spread Love and Epilepsy Awareness this Valentine’s Day

This Valentine’s Day we are asking all caregivers and those who love an American with epilepsy to share a picture of themselves with a purple heart (since purple is the color of epilepsy awareness!) on social media with the caption “Someone I love is 1 in 26” to raise awareness that 1 in 26 Americans will develop epilepsy in their lifetime. Create your own heart at home, print out a purple heart from our website, or color one of the heart coloring pages available on our website! Be sure to tag us and use #SayEpilepsy when you post your picture!

 

Print My Valentine’s Day Epilepsy Awareness Heart


Upcoming Webinar: Cutting-Edge Technologies for Treating Ultra-Rare Epilepsies

Save the date for our upcoming webinar, Cutting-Edge Technologies for Treating Ultra-Rare Epilepsies, which will take place Thursday, February 23 at 2 pm CT.

 

 

 

 


Champions Challenge: $425K for 25

For 25 years, CURE Epilepsy Champions from around the US and beyond have rallied their professional networks, local businesses, friends, and families to give in support of our mission. While we are proud to celebrate our accomplishments, we have much left to do! This year we call on all our Champions, new and long-standing, to participate in the 25th Anniversary Champion’s Challenge. All it takes is a fun idea to help raise awareness and encourage donations. Just as you set your fundraising goal, we will set ours. In celebration of 25 years, we hope to break the record of most Champion funds ever raised—$425,000 among all champions.

 

Your efforts are key in unlocking the CURE Epilepsy Champion’s Chest. Every Champion host who helps unlock this chest will unlock a raffle ticket to win a trip to Epilepsy Awareness Day at Disneyland for a family of four in 2024. Every fundraiser who raises over $1,000 will also receive additional CURE Epilepsy treasures from the chest.

 

Join Us to Raise $425K


25th Anniversary Special Edition: CURE Epilepsy Discovery: Funding Basic Mechanisms Research Drives Momentum Toward a CURE

Basic research provides hope for a cure for the epilepsies; by better understanding the mechanisms that cause seizures, we can develop curative treatments for the epilepsies. For 25 years, CURE Epilepsy has been funding breakthrough research, including the research of John Swann on Infantile Spasms, to advance science to find a cure for epilepsy.

 

 

 

Read


Charity Matters Podcast Featuring CURE Epilepsy Founder, Susan Axelrod

 

CURE Epilepsy Founder, Susan Axelrod, speaks with Charity Matters podcast host, Heidi Johnson, about her journey of raising a child with epilepsy and searching for a cure.

 

 

 

Listen


 

Apply for the 2023 Global Genes RARE Compassion Program

 

Individuals and families can now apply to be chosen to help educate the next generation of healthcare providers about undiagnosed and rare diseases. The 2023 Global Genes RARE Compassion Program will run from April-November 2023.

 

 

 

Apply


 

What’s New from the Seizing Life® Podcast

After Decades of Seizures, an Epilepsy Diagnosis Begins to Provide Answers

 

Years after recovering from meningitis as an infant, Ara began experiencing seizures as a teenager. Despite visiting numerous neurologists and trying various medications, Ara continued to experience seizures for decades.

Watch or Listen

 

 

Recent Advances in Diagnostic and Surgical Tools for Epilepsy

 

Recorded live at Epilepsy Awareness Day at Disneyland this past November, we take a look at diagnostic and surgical tools that assist physicians in localizing and removing areas of the brain that produce seizures.

Watch or Listen

 

 

Unleashing Your Inner Mamma Bear

 

Recorded live at Epilepsy Awareness Day at Disneyland this past November, epilepsy advocate and mother Kate Neale Cooper and podcast host and mother Kelly Cervantes share their experiences parenting children with epilepsy and offer advice on advocating for your child’s epilepsy care.

Watch or Listen

 

Watch these and all of our upcoming Seizing Life episodes here.


The CURE Epilepsy Store

 

Need apparel or accessories to raise epilepsy awareness? Check out the CURE Epilepsy Store!

 

 

 

 

Shop


Please mark your calendar for the following key dates in the epilepsy community:

  • January 1 – December 31, 2023 – CURE Epilepsy’s 25th Anniversary
  • February 13 – International Epilepsy Day
  • March 25 – Purple Day Expo at Disney World
  • March 26 – Purple Day
  • October 18 – SUDEP Action Day
  • October 31- November 1 – Epilepsy Awareness Day at Disneyland
  • November – Epilepsy Awareness Month
  • December 1-7 – Infantile Spasms Awareness Week

 

1 in 26 individuals will be impacted by epilepsy in their lifetime.
Each person has their own story.

Read Sherri’s Story

 

Sherri Brady: Helping the Epilepsy and Rett Syndrome Communities

In support of Black History Month, we are highlighting some of the many Black individuals who are making a meaningful impact within the epilepsy community. First, we highlight the beloved Sherri Brady.

Sherri joined the epilepsy community when her daughter, Lauren, was diagnosed with Rett syndrome before her second birthday. Rett syndrome is a rare neurological disorder caused by a genetic mutation in which it is common for children to have more than one seizure type.

One day Sherri received a call from Lauren’s daycare that Lauren was exhibiting strange behavior, so they asked Sherri to get to the daycare as quickly as possible. “And of course, I probably broke all speed limits and rules of the law to get to the daycare as quickly as I could,” says Sherri, recounting that day. Sherri picked her daughter up and took her to the hospital, where doctors told Sherri that Lauren had suffered a febrile seizure. Shortly after, Lauren was diagnosed with Rett syndrome.

Sherri has become a Rett syndrome advocate and has been the Southern California regional rep for the International Rett Syndrome Foundation for over a decade. In that role, she has helped countless families navigate the complexities of managing the healthcare system and accessing available support services for those with Rett syndrome. For the past 20 years, Sherri has organized an annual picnic for parents of children with disabilities including two virtual picnics in 2020 and 2021 when the COVID-19 pandemic and resulting lockdowns led to unprecedented challenges for families with children with disabilities.

Sherri’s impact on the epilepsy community and her drive to continue to improve the services for those with Rett syndrome are inspirational. CURE Epilepsy is grateful to Sherri for all she has done for the epilepsy community and to raise awareness about Rett syndrome.

The Epidemiology of Epilepsy in Older Adults: A Narrative Review by the ILAE Task Force on Epilepsy in the Elderly

Abstract found on PubMed

In an aging world, it is important to know the burden of epilepsy affecting populations of older persons. We performed a selective review of epidemiological studies that we considered to be most informative, trying to include data from all parts of the world. We emphasized primary reports rather than review articles. We reviewed studies reporting the incidence and prevalence of epilepsy that focused on an older population as well as studies that included a wider age range if older persons were tabulated as a subgroup. There is strong evidence that persons older than approximately 60?years incur an increasing risk of both acute symptomatic seizures and epilepsy. In wealthier countries, the incidence of epilepsy increases sharply after age 60 or 65?years. This phenomenon was not always observed among reports from populations with lower socioeconomic status. This discrepancy may reflect differences in etiologies, methods of ascertainment, or distribution of ages; this is an area for more research. We identified other areas for which there are inadequate data. Incidence data are scarcer than prevalence data and are missing for large areas of the world. Prevalence is lower than would be expected from cumulative incidence, possibly because of remissions, excess mortality, or misdiagnosis of acute symptomatic seizures as epilepsy. Segmentation by age, frailty, and comorbidities is desirable, because “epilepsy in the elderly” is otherwise too broad a concept. Data are needed on rates of status epilepticus and drug-resistant epilepsy using the newer definitions. Many more data are needed from low-income populations and from developing countries. Greater awareness of the high rates of seizures among older adults should lead to more focused diagnostic efforts for individuals. Accurate data on epilepsy among older adults should drive proper allocation of treatments for individuals and resources for societies.

Fear of Public Places Is Common in Adults with Epilepsy 

Article published by NewsWire

About 5.1 million people in the U.S. have a history of epilepsy, which causes repeated seizures. According to the Epilepsy Foundation, epilepsy is the fourth most common neurological disorder. While current research has shown an increase in anxiety and depression among people with epilepsy, little is known about this population and agoraphobia, an anxiety disorder that involves the fear of being in a public place or in a situation that might cause panic or embarrassment. 

However, a recent study from Heidi Munger Clary, M.D., M.P.H., associate professor of neurology at Wake Forest University School of Medicine, shows that phobic and agoraphobic symptoms are common and associated with poor quality of life in people with epilepsy. 

The study appears online in Epilepsy Research. 

“We know that agoraphobia can lead to delays in patient care because of a reluctance to go out in public, which includes appointments with health care providers,” said Munger Clary, the study’s principal investigator. “So, this is an area that needs more attention in clinical practice.” 

In the study, researchers conducted a cross-sectional analysis of baseline clinical data from a neuropsychology registry cohort study. Researchers analyzed a diverse sample of 420 adults, ages 18 to 75, with epilepsy who underwent neuropsychological evaluation over a 14-year period at Columbia University Medical Center in New York.

Research Explores if Artificial Intelligence Can Support Safer Prescribing for People with Intellectual Disabilities and Epilepsy 

Article published by University of Plymouth

 

Researchers at the University of Plymouth are launching a study to explore whether artificial intelligence (AI) technologies can be used to support safer prescribing for older adults with intellectual disabilities and epilepsy. 

The research, supported by the Bailey Thomas Charitable Fund, will fund the development of an AI-driven decision support tool. 

The team is planning to use the technology to identify clinical factors that contribute to Drug Burden Index (DBI) scores, which defines the functional impact of a medicine based upon its anticholinergic and sedative properties. 

They will also look at how the medicines interact with each other, and which factors influence the DBI scores the most. 

With this information, the team hope to be able to produce a tool that will support GPs prescribing for older adults with intellectual disabilities and epilepsy. They will also assess the anticholinergic status of the patient and then safely optimize their medication accordingly. 

Rohit Shankar MBE, Professor of Neuropsychiatry in the Peninsula Medical School, and Shangming Zhou, Professor of e-Health in the Centre for Health Technology, are leading the project. 

Assisted by Professor of Medical Statistics Victoria Allgar, this project will use REDCap cloud technology to collect patient data including demographics, levels of intellectual disability, genetic variants, epilepsy history, seizure profile, all prescribed medication, and medical co-morbidities.