For Caregivers of Dravet Patients, Emotional and Financial Impact High, Study Reports

Published by: Dravet Syndrome News
Written by: Iqra Mumal

Families caring for patients with Dravet syndrome experience significant emotional, social, and financial impact, according to a multinational study.

This study also found that directs costs from non-seizure-related healthcare use are four times higher than costs directly linked to seizures. High seizure burden was associated with higher healthcare costs as well.

The study, “Caregiver impact and health service use in high and low severity Dravet syndrome: A multinational cohort study,” was published in Seizure: European Journal of Epilepsy.

Symptoms of Dravet syndrome typically appear in the first year of a child’s life. Along with epilepsy, it is associated with a range of developmental and cognitive issues, behavioral disorders, and mobility problems.

While the impact of Dravet on families has not been widely studied, a recent survey has reported that caregivers of Dravet patients contend with a variety of concerns other than seizures, such as the disease’s impact on siblings and issues related to patients’ cognitive impairment.

In 2016, researchers conducted a large multinational online survey called the DS caregiver survey (DISCUSS), which was designed to further understand the clinical, economic, and humanistic burden of Dravet syndrome.

The survey included 584 caregivers of Dravet patients (83% pediatric; 17% adult), of whom more than 90% lived in Europe. The patients’ quality of life was very low, and Dravet patients who had a high seizure frequency had more coexisting conditions reported more emergency treatments, and had a lower quality of life than those who experienced fewer seizures.

To further investigate the financial factors associated with Dravet syndrome, researchers used data from the DISCUSS study to estimate the mean annual direct costs per patient for seizure-related and non-seizure-related healthcare and caregiver out-of-pocket costs in five European countries including France, Germany, Italy, Spain and the U.K.

The annual direct per patient cost for Dravet in these five countries was $15,885 ($9,783 when excluding anti-epileptic medications). This figure consists of $7,957 for treatment of seizure-related symptoms ($1,854 when excluding anti-epileptic therapies) and $7,929 for treatment of non-seizure-related symptoms.

Drivers of total direct costs were anti-epileptic drugs (38%) and non-seizure-related therapies (50%). When researchers excluded costs associated with anti-epileptic drugs, treatment for non-seizure-related symptoms contributed to 81% of direct healthcare costs. As a comparison, in a general pediatric population with epilepsy, treatments for non-seizure-related symptoms make up only 9.1% of total direct costs.

These treatments included physiotherapy, speech and behavioral therapy, and therapies for learning difficulties,  autism/autistic-like symptoms, and attention deficit disorder.

Among these, physiotherapy and speech therapy made up most (79%) of the non-seizure-related costs. Click here to read the rest of the story.

World Syndrome Day

Date: March 21, 2022

World Down Syndrome Day is an annual celebration and global awareness day officially observed by the United Nations since 2012. March 21 was selected to signify the uniqueness of the 21st chromosome which causes Down syndrome.

Facts and Statistics

Down syndrome is a genetic disorder that develops when there is an abnormal cell division resulting in an extra copy of chromosome 21.

  • There are three types of Down syndrome: trisomy 21 (nondisjunction) accounts for 95% of cases, translocation accounts for about 4%, and mosaicism accounts for about 1%
  • Down syndrome is the most commonly occurring chromosomal condition. Approximately one in every 700 babies in the United States is born with Down syndrome – about 6,000 each year
  • Down syndrome occurs in people of all races and economic levels
  • The incidence of births of children with Down syndrome increases with the age of the mother. But due to higher fertility rates in younger women, 80% of children with Down syndrome are born to women under 35 years of age
  • People with Down syndrome have an increased risk for certain medical conditions such as congenital heart defects, respiratory and hearing problems, Alzheimer’s disease, childhood leukemia and thyroid conditions. Many of these conditions are now treatable, so most people with Down syndrome lead healthy lives
  • A few of the common physical traits of Down syndrome are: low muscle tone, small stature, an upward slant to the eyes, and a single deep crease across the center of the palm. Every person with Down syndrome is a unique individual and may possess these characteristics to different degrees or not at all
  • Life expectancy for people with Down syndrome has increased dramatically in recent decades – from 25 in 1983 to 60 today
  • People with Down syndrome attend school, work, participate in decisions that affect them, have meaningful relationships, vote and contribute to society in many wonderful ways
  • All people with Down syndrome experience cognitive delays, but the effect is usually mild to moderate and is not indicative of the many strengths and talents that each individual possesses


Down Syndrome and Sleep Apnea

Signs of Autism Spectrum Disorder in Children with Down Syndrome

Down Syndrome and Obesity

Down Syndrome and Heart Disease

Six Things to STOP Saying to your (ADHD) Kids

Published by: Impact ADHD

Written by: Elaine Taylor Klaus

One of the most common questions I hear from parents – in coaching sessions, on training calls – is, “How do I say that so that my child will respond?” How do you give your kids directions without triggering a reaction? How do you get them to do their homework without starting a fight? You know the challenges – the list could go on all day.

While there is a lot of guidance Diane and I teach about how to communicate with our kids in a way that fosters connection and independence, sometimes we have to start by breaking old habits. It is every bit as important to pay attention to what we DON’T want to say to our kids, as it is to what we DO want to say. Click here to read the rest of the story.

The Most Supportive States for Raising a Child With Autism

Published by: Autism Parenting Magazine

Being a parent is challenging in its own right, and parenting a child with autism spectrum disorder (ASD) brings its own unique challenges. All parents want what’s best for their children, and it takes time, effort, and money to develop the whole child.

However, navigating systems of support for families in the US can be complex, to say the least. From deciding which daycare is best for your child and then finding a school that suits his/her needs, to securing a job with a salary that pays enough to support a family and also provides adequate healthcare, it is a real struggle for many parents in the US to make ends meet. Click here to read the rest of the article.

Teaching Strategies for Executive Function Disorder

According to CHADD org, Executive function skills refers to brain functions that activate, organize, integrate and manage other functions which enables individuals to account for short- and long term consequences of their actions and to plan for those results.

The following resources provides strategies on teaching students with executive function disorder skills:

10 tools to help teachers develop Executive Function classroom skills-The Edvocate

Activities Guide: Enhancing and practicing executive function skills with children from infancy to adolescence- Center on the Developing Child

Addressing Executive Function at the secondary level– Atlanta Public School

Executive Function in the classroom: Neurological Implications for Classroom Intervention– Reading Rockets

Executive Functioning Strategies for the Classroom– Pathway 2 Success

How to address executive function skills in the classroom-eschool news

Standard Interventions for Executive Functions– PDF Format

Teaching students with executive functioning issues– Resilient Educator

Treatment and strategies for weak executive function– Additude