Showing posts with label quality of life. Show all posts
Showing posts with label quality of life. Show all posts

Wednesday, March 11, 2015

What should I know about sleep apnea?

This article gives information on the different types of sleep apnea and the available treatments.

Sleep apnea is a type of sleep disorder characterized by interruptions or pauses in breathing during sleep. These interruptions can be significant and can be potentially life threatening. Because of this, the disorder can have an important impact on quality of life as well as the health of a patient.

Kim LaJack, Director of the Sleep Disorders Center at Opelousas General Health System, says symptoms of sleep apnea might include loud snoring, excessive daytime sleepiness and feelings of exhaustion upon awakening, as if sleep had never taken place. Other symptoms include depression, irritability, morning headaches, loss of sex drive, lack of concentration and memory problems.

If untreated, sleep apnea can lead to accidents due to drowsy driving as well as health issues such as hypertension, heart attacks, diabetes and strokes, according to LaJack. 

The Three Types of Sleep Apnea 

1. Obstructive sleep apnea: OSA is essentially breathing that is interrupted by a physical block to airflow despite respiratory effort, causing complete or partial closure of the airway during sleep. The three causes for OSA are enlarged tonsils blocking the airway, an enlarged neck or a large tongue blocking the airway. 

2. Central sleep apnea: This type of sleep apnea occurs when the brain fails to send the appropriate signal to the muscles responsible for initiating breathing. “We see this with patients who have neuromuscular disorders or who are on a lot of pain medication,” LaJack explains. “Sometimes patients with heart failure also experience central sleep apnea.” 

3. Complex sleep apnea: This type of sleep apnea encompasses a combination of obstructive and central sleep apnea, with the airways closed off and breathing suspended. 

“While there are three different kinds of sleep apnea, the most frequently treated at Opelousas General is obstructive sleep apnea,” LaJack says. 

Diagnosis and Treatment

Giving the history of symptoms to a qualified physician is the only way to determine if a patient's experience requires a sleep study, says LaJack. Patients who have undergone initial evaluation spend an evening at the Sleep Disorders Center at Opelousas General Health System, where their sleep is closely monitored. 

“Monitoring involves obtaining information about sleep stages, including heart rate, respiratory effort and oxygen and carbon dioxide levels,” LaJack says. 

The treatment for sleep apnea varies depending on the cause. OSA in adults involves initiation of continuous positive airway pressure (CPAP) therapy. The CPAP machine delivers a pressure into the patient's airway by way of a mask and tubing, acting as a splint to hold the airway open. LaJack says OSA in children is generally treated with tonsillectomy. On occasion, children will need to be treated with CPAP, and with family support, it often is successful. In regards to central sleep apnea, PAP therapy involves an added element of delivering a breath during pauses in breathing. 

Dr. Joseph Y. Bordelon, Medical Director of the Sleep Disorders Center, emphasizes, “No matter the cause of the sleep apnea, the goal of therapy is to maintain an open airway so that the patient can have a more restful night of sleep, experience improved quality of life, and to prevent complications associated with untreated sleep disordered breathing. If we can delay someone's premature trip to the funeral home or nursing home, then we have been successful.”

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Wednesday, June 25, 2014

Study: Epilepsy patients who don't take medication may become depressed

A study claims that epilepsy patients who do not take medication may become depressed, which can reduce their quality of life.

A new study led by Alan B. Ettinger, M.D., M.B.A., Director of the Epilepsy Center at Neurological Surgery, P.C. (NSPC), has found that many patients who fail to take their antiseizure medications are suffering from depression. Previous studies by Dr. Ettinger and others have found a high incidence of depression in people with epilepsy, but this is the first research to show a direct link between depression and medication nonadherence. The study will be published in the July 2014 issue of the journal Epilepsy & Behavior, and is available online ahead of publication.

"Our previous studies have shown that there are substantial consequences to missing doses of antiepileptic medications, even occasionally," said Dr. Ettinger. "We have also seen that depression impacts quality of life. Now we see that depression is a significant factor in drug nonadherence. This demonstrates that it is critical for physicians to screen their patients for depression, and to talk with them about the importance of taking all of their medications when scheduled."
Missing even one dose of an antiepileptic drug can cause breakthrough seizures, even in patients whose epilepsy is well controlled by medications. This can have devastating effects -- including hospitalizations, falls and related injuries, and even death. Studies have shown that 30-50% of people with epilepsy don't adhere to their medication regimen.
"Other studies have shown a link between depression and failure to take medications in conditions such as hypertension and HIV, but little was previously known about the potential impact of depression on antiepileptic drug adherence," said Dr. Ettinger.
Among other factors thought to play a role in antiepileptic drug nonadherence are memory difficulties and medication side effects.
In the current study, researchers accessed a nationwide health plan/pharmacy database, and selected a sample of 10,000 epilepsy patients. 2,750 patients were randomly selected from this group and mailed an in-depth survey that included a number of validated questionnaires on medication adherence, depression status, seizure severity and frequency, and quality of life, among other factors. Questionnaires used in the survey included the Neurological Disorders Depression Inventory for Epilepsy (NDDI-E), which asks questions that are highly specific to epilepsy and is considered highly reliable. 465 patients completed and returned the survey. Claims data were analyzed with the widely used medication possession ratio (MPR), to measure drug adherence. (MPR represents the proportion of time that an individual was theoretically in possession of a medication.)
The researchers conducted a path analysis, a highly reliable and sophisticated type of statistical modeling, to determine the relationships between depression, drug adherence, seizure severity and quality of life. One key finding was that depression, as determined by the NDDI-E, was significantly correlated with an elevated risk of antiepileptic drug nonadherence. Depression, as measured by the NDDI-E and another survey instrument, was also associated with low quality of life scores. In addition, patients with depression were more likely to report having more severe seizures.
"We have known for a while that depression impacts patients' quality of life, and we know that it can be treated; now we know that there is a direct link to patient harm," said Dr. Ettinger, who works on a number of committees through the American Epilepsy Society to educate clinicians on the importance of depression screening.
Dr. Ettinger suggests that neurologists inquire about each patient's mood and quality of life, as well as medication adherence, during office visits. There are also brief questionnaires that patients can complete in the waiting room to indicate potential mental health issues. He also points out that some antiepileptic medications are now available in once-daily formulations (making it easier for patients to remember to take them), and that there are other medication adherence reminders now available, including smartphone alarm apps.
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Sunday, November 24, 2013

What changes quality of life in a child with epilepsy? An action plan for families and neurologists.

This study looks at children recently diagnosed with epilepsy and determines their health-related quality of life which can be changed by medications, cognitive problems or behavior, parental depression and family demands.

The objectives of this study were to document trajectories of health–related quality of life (HRQL) and to identify predictors of the trajectory group in children with new–onset epilepsy. Results suggested that children with epilepsy are not homogenous but rather consist of groups with different trajectories and unique predictors of HRQL. Problems associated with child behavior and cognition were the strongest predictors identified. Given that several risk factors are modifiable, it is important to examine these as potential targets within a family–centered framework to improve HRQL of children with new–onset epilepsy.
Methods
  • Data were obtained from the Health Related Quality of Life in Children with Epilepsy Study, a prospective multisite study of children 4–12 years old with new–onset epilepsy followed for 24 months.
  • Health–related quality of life was measured using the Quality of Life in Childhood Epilepsy questionnaire.
  • Trajectories of HRQL were investigated using latent class trajectory modeling.
  • Multinomial logistic regression was used to identify child, parent, and family predictors of HRQL trajectories.
Results
  • A total of 374 families responded at baseline and 283 (76%) completed the study.
  • Five HRQL trajectories were observed: low–increasing (4%), moderate–decreasing (12%), moderate–increasing (22%), high–increasing (32%), and high–stable (30%).
  • Many children in the low–increasing, moderate–increasing, high–increasing, and high–stable had clinically meaningful improvements in HRQL: 82%, 47%, 63%, and 44%, respectively.
  • In contrast, the majority of children in the moderate–decreasing group (56%) experienced clinically meaningful declines in their HRQL.
  • Factors predicting trajectories were number of antiepileptic drugs prescribed, presence of comorbid behavior or cognitive problems, parent depression, and family functioning and demands.
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Wednesday, October 09, 2013

Sleep Tips for Parents of Autistic Children

A study shows that teaching sleep tips to parents of children with autism helps the child's behavior.

Sleep education for parents of children with autism helps improve the youngsters' behavior and quality of life, according to a new study.
Autism is a neurodevelopmental disorder marked by difficulties in social interactions and communications. Autism spectrum disorders encompass a wide range from mild to severe.
For the study, researchers provided sleep education for the parents of 80 children, aged 2 to 10, with an autism spectrum disorder. During the sessions, the parents learned about daytime and evening habits that promote sleep, including the importance of increasing exercise, limiting caffeine, and lessening the use of video games and computers close to bedtime.
In addition, sleep educators helped the parents create a visual schedule for their children to help them establish a bedtime routine and talked about ways to help kids get back to sleep if they woke up at night.
"We found that one hour of one-on-one sleep education or four hours of group sleep education delivered to parents, combined with two brief follow-up phone calls, improved sleep as well as anxiety, attention, repetitive behavior and quality of life in children with [autism spectrum disorders] who had difficulty falling asleep," study author Dr. Beth Malow, a professor of neurology and pediatrics, and a professor of cognitive childhood development at Vanderbilt University, said in a university news release.
"The parents also benefited; they reported a higher level of parenting competence after completing the education sessions," Malow added. "The one-on-one and group sessions showed similar levels of success. In contrast, an earlier study that simply gave parents a pamphlet without guidance on how to use it did not provide the same level of improvement in child sleep."
The study was published in a recent issue of the Journal of Autism and Developmental Disorders.
Future research is needed to determine the best methods for providing sleep education to families, including telemedicine- and Internet-based approaches, Malow said. She and her colleagues within the Autism Speaks Autism Treatment Network are also building partnerships with local pediatric practices to offer training on sleep education.
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Monday, March 04, 2013

10 Important Things to Know About Epilepsy

This article discusses 10 important aspects of epilepsy that are important to know.


As a neurologist with specialty training in this field, I have been devoted to helping the plight of individuals with epilepsy find better treatments, advocate for better management and to illuminate some of the terrible misinformation that is spread about this condition.  In March 2012, the Institute of Medicine took up the topic of epilepsy and how it is handled in the United States (U.S.).  As a member of that panel, I was able to hear important testimony from public, private and government institutions about how epilepsy is managed in the U.S. and some of the major problems that affect its care and the people who have it.  The following are several important items that may help to clarify one’s knowledge about epilepsy and show that this is truly a common condition.
1. Epilepsy is the condition of having repeated, unprovoked seizures, whereas a seizure is anabnormal electrical discharge of the brain which then results in an individual losing consciousness or having a change in their neurological function. There are several types of seizures and not all are dramatic in their presentation, though they are often depicted in movies and television as a convulsion.  Some seizures manifest by one simply losing focus, but to a bystander, it may seem as daydreaming, wandering or a tremor.  Therefore, not all seizures are very dramatic in their presentations.
2. Epilepsy is very common.  According to the CDC, one in 26 people in the U.S. will develop epilepsy at some point in their lifetime.  If you think about it, that means two persons on every bus or two people in every subway car will have epilepsy.  There are 150,000 new cases of epilepsy diagnosed in the United States annually; 2.2 million people in the U.S. and more than65 million people worldwide have the condition.
3. Children and older adults are the fastest-growing segments of the population with new cases of epilepsy; however, the reason that they have epilepsy varies dramatically.  In children, we see an overabundance of genetic and infectious causes of seizures. For older adults, stroke and Alzheimer’s disease seem to be the common cause of epilepsy and seizures in this population.
4. There are numerous causes of seizures and epilepsy.  Stroke, head trauma and tumors are common causes of seizures in the U.S., yet the number one cause of seizures outside of the U.S. is an infection which is completely preventable by simply washing one’s hands. Neurocysticercosis– caused by the Taenia solium tapeworm– is one of the most common causes of epilepsy in the world and an increasing cause of seizures in the U.S.   Other preventable causes of epilepsy are head trauma from car accidents, violence or the consequences of military intervention.
5. Epilepsy is not a benign condition and can result in death. The number of people with epilepsy who die of sudden unexpected death in epilepsy (SUDEP) varies from one of every10,000 newly diagnosed to nine of every 1,000 candidates for epilepsy surgery.
6. For many people with epilepsy, seizures can be effectively reduced or eliminated by medication, surgery, devices and dietary or other therapies; however, referral to epilepsy centers for surgery can take 15 years or more.  In the Latino population, there is a considerable misinformation and lack of information; oftentimes that lack of access does not translate into meaningful care. There are 26 different drugs approved for treatment in the U.S. for epilepsy.  Moreover there is a pacemaker like device known as the vagus nerve stimulator, a diet- ketogenic or modified Atkins, and numerous surgeries.  These effective treatments are available for many types of epilepsies; however, access and referrals to these treatments fall short.
7. There is considerable stigma associated with epilepsy that sometimes overwhelms the condition itself. The word” epilepsy” is considered stigmatizing in its own right.  The long history of epilepsy is full of examples of discrimination and secrecy due to misinformation and lack of understanding by the general public.  This stigma can have a detrimental effect on people with epilepsy and continued and sustained efforts are needed to raise public awareness and convey what epilepsy is and what it is not, as well as the basic message that this is an exceedingly common condition.
8. There are significant quality of life issues associated with epilepsy and one of the most significant is driving.  Every state in the U.S. has a law that dictates whether someone with epilepsy can or cannot drive and the length of time they need to be seizure free for them to drive.  In six of these states, the law has mandatory reporting by the physician of all patients with epilepsy to a medical board.  Individuals need to be aware of these laws as there are, in some cases, criminal consequences for both physician and patients for their lack of awareness associated with it.
9. Epilepsy is more than just seizures as it often has other accompanying conditions associated with it.  Oftentimes, poor memory, mood issues, depression and anxiety walk hand in hand with issues associated with epilepsy and need to be managed and thought of when caring for the individual with epilepsy.
10. Sadly, many health professionals need to be better informed about epilepsy.  Only 20 percent of U.S. medical schools require training in neurology…and epilepsy and how to treat it.  Improvements in epilepsy care can only be made if the quality and quantity of education about epilepsy for health care professionals are improved dramatically at undergraduate and graduate levels of lifelong learning processes.  In addition, more educational efforts for patients with epilepsy and their families is needed.
It is only with a concerted effort to illuminate epilepsy and talk about the condition that one will hopefully empower individuals with knowledge so as to improve quality of life.
Read more here

NICE Quality Standards for Epilepsy Diagnosis, Management and Care

NICE (the National Institute for Health and Clinical Excellence) published their quality standards for the diagnosis, management and care for people with epilepsy. This is intended to improve the quality of care for people with epilepsy.


The National Institute for Health and Clinical Excellence (NICE) has published quality standards for the management and care of patients with epilepsy, a central theme of which is improving diagnosis of the condition.

The new quality standards contain a prioritised set of specific statements that, if delivered across the whole care pathway, should help boost the effectiveness, quality, safety and experience of care for people with the condition, NICE said.
For example, adults being investigated for epilepsy should be tested within four weeks, and those diagnosed with the condition should be seen by an epilepsy specialist nurse who is contactable between scheduled reviews.
Children and young people with a suspected seizure should be seen by a specialist in the diagnosis and management of epilepsies within two weeks, while those with a history of prolonged or repeated seizures must have an agreed written emergency care plan, the quality standards advise.
Epilepsy is the most common serious neurological disorder in the UK, affecting around 600,000 people. More than 40 different types of epilepsy, with 40 different associated seizure types, have been identified, and the nature of the condition makes it hard to diagnose accurately, leaving patients without access to treatment.
"Therefore, a key part of these new quality standards is focused on improving this, and ensuring that diagnosis and treatment are confirmed and reviewed as necessary," explained Gillian Leng, the Institute's Deputy Chief Executive and Director of Health and Social Care.
According to Simon Wigglesworth, Deputy Chief Executive at Epilepsy Action, many people with epilepsy are simply not getting the care they should, and "if the new standards are implemented consistently and effectively, care for people with epilepsy will be vastly improved".

Read more here

Tuesday, February 26, 2013

Childhood Epilepsy, Memory, and Health Quality - No Connection to Seizure Frequency



Children with epilepsy and poor memory, in this study,  appear to have lower health-related quality of life.

Interestingly, this finding is not connected to seizure frequency.

As an illness, there is an experience that is broader than just the "seizures". 

Ask your neurologist about cognitive, attention, and emotional problems. Assess your child's sleep. Assess the effects of medications. Bone health, nutrition, weight gain and loss are all common problems. - JR


Poor memory in children with epilepsy linked to lower health related quality of life

(dailyRx News) Memory is often an area of concern for people with epilepsy. For children who are just learningabout the world around them, memory can be of particular importance to their physical, mental, emotional and social development.
A recent study investigated the link between memory and health-related quality of life - or how overall well-being is affected over time by disease, disability or other health issues - in children with epilepsy.
The study found that verbal, emotional difficulty and behavioral problems were associated with a lower health-related quality of life more than other factors, including frequent and intense seizures.
Marianne Hrabok, PhD, of the Alberta Children’s Hospital Research Insititute in Calgary, Alberta, Canada, and colleagues studied 90 children with epilepsy at a children’s hospital.
The number and frequency of seizures in the children varied. Thirty-seven percent of children had fewer than one seizure a month while 15 percent had more than one seizure a day.
Verbal skills and health-related quality of life assessments were examined. The researchers also looked at intellectual function, executive function, behavior and ability to adapt.
Details on socio-demographic factors and neurological status were included in the study.
Gender, age and socioeconomic status are examples of socio-demographic factors. Number of antiepileptic drugs and seizure severity are examples of neurological status.
The researchers found that health-related quality of life was not associated with socio-demographic and neurologic factors.
However, neuropsychological factors - including verbal memory, IQ, executive function, emotional and behavioral function and adaptability - were associated with health-related quality of life. Memory, emotional function and behavioral function had a particular relationship to health-related quality of life.
Those with low verbal memory had a two times greater risk of low health-related quality of life than those who did not have low verbal memory. Those with emotional and behavioral difficulty had a 10 times greater risk of low health-related quality life than those without the difficulty.
Having both low verbal memory and emotional and behavioral difficulty resulted in a risk 17 times greater than not having those difficulties.
The study authors believe these results showed the importance in neuropsychological assessment. Identifying those with poor memory and emotional function could help doctors identify those more likely to have a low health-related quality of life.
The authors suggested that psychosocial interventions for children with epilepsy include a team of health professionals with varying disciplines, an emphasis on involvement of the parents, psychological education, cognitive and behavioral strategies and the development of coping skills. Past studies have shown that a six-week program that includes these factors can improve health-related quality of life.
The study was published in Pediatrics. The research received no external funding. The authors did not report any conflicts of interest.
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