Taking care of people with TBI: New tool could speed caregiver research

April 17, 2019

Science Daily/Michigan Medicine - University of Michigan

A traumatic brain injury happens in an instant: a battlefield blast, a car crash, a bad fall. But the effects can last a lifetime -- and can leave the survivor dependent on daily care from their loved ones for decades.

Now, a new tool seeks to give a voice to those caregivers, who spend countless hours tending to the daily needs of family members whose moods, thinking and abilities seemed to change overnight.

Developed by researchers from across the country who worked with hundreds of caregivers of people with TBI, it provides a new standard way to measure the physical, mental and emotional effects of caring for survivors of TBI.

The researchers hope it can form the basis for a new wave of research that could inform clinical care for patients and their caregivers, as well as, caregiver training and support programs, and even caregiver reimbursement policies.

They've published the results of a rigorous evaluation of the tool in a special supplement to the journal Archives of Physical Medicine and Rehabilitation, and are sharing the tool on several platforms for researchers.

They also hope the tool, called TBI-CareQOL Measurement System, could be useful to researchers who want to study caregivers of other patients whose "new normal" is very different from the one they had before, and isn't likely to change.

Many TBI survivors suffered their injury in the prime of life, and many during service to the nation. TBI is the most common injury among service members who returned from the wars in Iraq and Afghanistan, with nearly 384,000 service members and veterans affected. One-third of them, and another 90,000 civilians who sustain TBIs each year, are left with moderate to severe disability from their injury.

"Caregivers of persons with TBI are underserved and overlooked," says Noelle Carlozzi, Ph.D., the University of Michigan Medical School psychologist who led the effort. "The medical system treats the patient and sends them home, but behind many of our severely injured patients are family caregivers who we don't do enough to train, support or study in a scientific way."

Carlozzi heads the Center for Clinical Outcomes Development and Application, based in the Department of Physical Medicine and Rehabilitation of Michigan Medicine, U-M's academic medical center.

A team effort

In the new papers, she and her colleagues from Northwestern University, Wayne State University/the Rehabilitation Institute of Michigan, the Walter Reed National Military Medical Center/Defense and Veterans Brain Injury Center, Baylor College of Medicine/TIRR Memorial Hermann, and the University of Delaware lay out how they developed and tested the TBI-CareQOL tool.

The team worked with 560 caregivers who took care of 344 civilians and 216 military service members or veterans who had suffered a TBI more than a year earlier. They found the caregivers through their own institutions and through outreach efforts from the Hearts of Valor caregiver support network run by the Operation Homefront nonprofit organization, and by the Brain Injury Association of Michigan.

By taking time out of their already busy schedules to fill out banks of computerized questionnaires that the research team developed, the caregivers made it possible to create the new tool.

The researchers also got permission to look at the medical records of the patients the caregivers were taking care of, so they could know the severity of the injury and other information.

Thanks to this help, Carlozzi says, the TBI-CareQOL tool should enable a much stronger form of research on caregivers' health and quality of life. This could help bring new resources to this field of study.

Capturing many measures

The tool includes measures of how much of a sense of loss the caregiver feels for themselves or the loved one they're caring for, how much anxiety they feel about their ability to tend to their loved one's needs, how trapped they feel in their role as caregiver, and how much strain the daily demands of their loved one's care places on them. This latter measure includes feelings of being stressed, overwhelmed or even downtrodden by caregiver responsibilities.

Carlozzi notes that in addition to these new measures, the new tool includes standard measures of health-related quality of life used to study patients with many conditions. Called PROMIS measures, they have been previously validated in other studies; the new papers validate them among caregivers of people with TBI.

The team envisions that most caregivers who take part in future studies that use the TBI-CareQOL tool will do so on tablets, smartphones or computers. They've designed it so that caregivers answer questions most pertinent to them based on their answers to previous questions -- which means it takes up the shortest time possible but still gets complete information. A paper form will also be available.

The computerized version will be available through Assessmentcenter.net, as well as other online data capture systems. They will also make it available through a website that the team is developing. In the meantime, paper forms are available by contacting Carlozzi.

Potential uses

Measuring caregivers' current state, and how it changes over time, could become part of the routine clinical care for patients with TBI, she says. How well a caregiver is faring can affect how well the patient does, for instance with therapy, medications and behavioral health issues.

"We hope that in addition to the TBI-CareQOL being used for research, clinicians will adopt these measures to screen caregivers during office visits by patients with TBI, and figure out who needs additional services," she says, noting that caregivers usually attend their loved ones' appointments because patients with TBI can have trouble remembering or accurately reporting what their clinicians said or recommended.

Assessing caregivers could also help fine-tune the financial, social and service support they receive from various sources. Currently, some family caregivers who have lead responsibility for caring for current and former military service members with TBI can receive compensation for their time. So can some caregivers of people injured in automobile accidents in states with no-fault auto insurance.

But often these payments are not enough to provide a level of income similar to what they could receive in the workplace, even though many caregivers have to leave their jobs or cut back on their hours in order to care for a loved one with serious lasting issues from their TBI. That financial stress can often compound the emotional stress caregivers feel.

In upcoming papers, Carlozzi and her colleagues will report their findings from measures related to disruption of family life -- a topic that has special importance to military and veteran caregivers, who often have small children to care for at the same time they're caring for a TBI-survivor spouse. They also hope to do more to measure sleep and activity levels in caregivers.

"Thanks to the efforts of all our partners, and our funding from the National Institutes of Health and the Defense and Veterans Brain Injury Center, we're glad to share this validated, rigorous tool for assessing the quality of life of caregivers of persons with TBI, which we hope will provide a much-needed understanding of their lives and opportunities to help improve their care," says Carlozzi.

https://www.sciencedaily.com/releases/2019/04/190417111443.htm

Traumatic brain injury and kids: New treatment guidelines issued

March 1, 2019

Science Daily/Oregon Health & Science University

To help promote the highest standards of care, and improve the overall rates of survival and recovery following TBI, a panel of pediatric critical care, neurosurgery and other pediatric experts today issued the third edition of the Brain Trauma Foundation Guidelines for the Management of Pediatric Severe TBI.

Each year in the United States, more than 600,000 children are seen in emergency rooms due to traumatic brain injury, a disruption to the normal function of the brain caused by a bump, blow or jolt to the head. Severe TBI results in approximately 7,000 childhood deaths annually, while survivors of the condition may suffer from long-term health conditions such as seizures, learning difficulty and communication disorders.

To help promote the highest standards of care, and improve the overall rates of survival and recovery following TBI, a panel of pediatric critical care, neurosurgery and other pediatric experts today issued the 3rd edition of the Brain Trauma Foundation Guidelines for the Management of Pediatric Severe TBI.

The updated guidelines reflect the addition of nearly 50 research studies, and include eight new, or revised, treatment recommendations for health care providers that range from the use of intracranial monitoring to the use of hypertonic saline to reduce acute brain swelling.

An executive summary of the guidelines published in the journals Pediatric Critical Care Medicine and Neurosurgery; the full guidelines are available via Pediatric Critical Care Medicine, an official journal of the Society of Critical Care Medicine and the World Federation of Pediatric Intensive and Critical Care Societies.

"These guidelines are vital to the proper care and treatment of children with serious brain injury," said co-author and clinical investigator Nathan Selden, M.D., Ph.D., Campagna Professor and Chair of the Department of Neurological Surgery at the OHSU School of Medicine in Portland, Oregon. "Now, health care providers around the world will have access to the best medical evidence and recommendations to help save and improve countless lives."

An associated manuscript, also published in Pediatric Critical Care Medicine, describes an algorithm designed to guide first and second tier therapies for infants and children with severe TBI. The tool for bedside use by caregivers, which supplements evidence-based recommendations in the updated guidelines, was created using a validated, consensus-based expert opinion process.

"We believe a combination of research findings and real-life experience will further advance the bedside care of infants and children with severe TBI, especially in treatment scenarios where scientific and clinical research is lacking," said first author Patrick Kochanek, M.D., Grenvik Professor and Vice Chairman of Critical Care Medicine and Director of the Safar Center for Resuscitation Research at the University of Pittsburgh. "This algorithm will also help to identify key research priorities to help ensure the ongoing momentum of consistent, high-quality care for patients across the globe."

The original Brain Trauma Foundation Guidelines published in 2003 and were last updated in 2012. The 3rd edition was developed as part of the Brain Trauma Evidence-based Consortium based at the Stanford University School of Medicine. The Pacific Northwest Evidence-based Practice Center at OHSU managed the effort, which included experts from OHSU, the University of Pittsburgh, Boston Children's Hospital, Phoenix Children's Hospital, Children's National Medical Center, Seattle Children's Hospital, the University of Utah, the University of British Columbia, and Duke University.

https://www.sciencedaily.com/releases/2019/03/190301192651.htm

Studies uncover long-term effects of traumatic brain injury

February 10, 2017

Science Daily/Cincinnati Children's Hospital Medical Center

Doctors are beginning to get answers to the question that every parent whose child has had a traumatic brain injury wants to know: What will my child be like 10 years from now?

In a study to be presented February 10 at the annual meeting of the Association of Academic Physiatrists in Las Vegas, researchers from Cincinnati Children's will present research on long-term effects of TBI -- an average of seven years after injury. Patients with mild to moderate brain injuries are two times more likely to have developed attention problems, and those with severe injuries are five times more likely to develop secondary ADHD. These researchers are also finding that the family environment influences the development of these attention problems.

·     Parenting and the home environment exert a powerful influence on recovery. Children with severe TBI in optimal environments may show few effects of their injuries while children with milder injuries from disadvantaged or chaotic homes often demonstrate persistent problems.

·     Early family response may be particularly important for long-term outcomes suggesting that working to promote effective parenting may be an important early intervention.

·     Certain skills that can affect social functioning, such as speed of information processing, inhibition, and reasoning, show greater long-term effects.

·     Many children do very well long-term after brain injury and most do not have across the board deficits.

More than 630,000 children and teenagers in the United States are treated in emergency rooms for TBI each year. But predictors of recovery following TBI, particularly the roles of genes and environment, are unclear. These environmental factors include family functioning, parenting practices, home environment, and socioeconomic status. Researchers at Cincinnati Children's are working to identify genes important to recovery after TBI and understand how these genes may interact with environmental factors to influence recovery.

They will be collecting salivary DNA samples from more than 330 children participating in the Approaches and Decisions in Acute Pediatric TBI Trial.

he primary outcome will be global functioning at 3, 6, and 12 months post injury, and secondary outcomes will include a comprehensive assessment of cognitive and behavioral functioning at 12 months post injury.

This project will provide information to inform individualized prognosis and treatment plans.

Using neuroimaging and other technologies, scientists are also learning more about brain structure and connectivity related to persistent symptoms after TBI. In a not-yet-published Cincinnati Children's study, for example, researchers investigated the structural connectivity of brain networks following aerobic training. The recovery of structural connectivity they discovered suggests that aerobic training may lead to improvement in symptoms.

Over the past two decades, investigators at Cincinnati Children's have conducted a series of studies to develop and test interventions to improve cognitive and behavioral outcomes following pediatric brain injury. They developed an innovative web-based program that provides family-centered training in problem-solving, communication, and self-regulation.

·     Across a series of randomized trials, online family problem-solving treatment has been shown to reduce behavior problems and executive dysfunction (management of cognitive processes) in older children with TBI, and over the longer-term improved everyday functioning in 12-17 year olds.

·     Web-based parenting skills programs targeting younger children have resulted in improved parent-child interactions and reduced behavior problems. In a computerized pilot trial of attention and memory, children had improvements in sustained attention and parent-reported executive function behaviors. These intervention studies suggest several avenues for working to improve short- and long-term recovery following TBI.

https://www.sciencedaily.com/releases/2017/02/170210165956.htm

Can light therapy help the brain?

April 2, 2015

Veterans Affairs Research Communications

An innovative therapy that applies red and near-infrared light to the brain is now being tested for Gulf War Illness, traumatic brain injury, and PTSD.

Following up on promising results from pilot work, researchers at the VA Boston Healthcare System are testing the effects of light therapy on brain function in veterans with Gulf War Illness.

Veterans in the study wear a helmet lined with light-emitting diodes that apply red and near-infrared light to the scalp. They also have diodes placed in their nostrils, to deliver photons to the deeper parts of the brain.

The light is painless and generates no heat. A treatment takes about 30 minutes.

The therapy, though still considered "investigational" and not covered by most health insurance plans, is already used by some alternative medicine practitioners to treat wounds and pain. The light from the diodes has been shown to boost the output of nitric oxide near where the LEDs are placed, which improves blood flow in that location.

"We are applying a technology that's been around for a while," says lead investigator Dr. Margaret Naeser, "but it's always been used on the body, for wound healing and to treat muscle aches and pains, and joint problems. We're starting to use it on the brain."

Naeser is a research linguist and speech pathologist for the Boston VA, and a research professor of neurology at Boston University School of Medicine (BUSM). She is also a licensed acupuncturist and has conducted past research on laser acupuncture to treat paralysis in stroke, and pain in carpal tunnel syndrome.

The LED therapy increases blood flow in the brain, as shown on MRI scans. It also appears to have an effect on damaged brain cells, specifically on their mitochondria. These are bean-shaped subunits within the cell that put out energy in the form of a chemical known as ATP. The red and near-infrared light photons penetrate through the skull and into brain cells and spur the mitochondria to produce more ATP. That can mean clearer, sharper thinking, says Naeser.

Naeser says brain damage caused by explosions, or exposure to pesticides or other neurotoxins--such as in the Gulf War--could impair the mitochondria in cells. She believes light therapy can be a valuable adjunct to standard cognitive rehabilitation, which typically involves "exercising" the brain in various ways to take advantage of brain plasticity and forge new neural networks.

"The light-emitting diodes add something beyond what's currently available with cognitive rehabilitation therapy," says Naeser. "That's a very important therapy, but patients can go only so far with it. And in fact, most of the traumatic brain injury and PTSD cases that we've helped so far with LEDs on the head have been through cognitive rehabilitation therapy. These people still showed additional progress after the LED treatments. It's likely a combination of both methods would produce the best results."

The LED approach has its skeptics, but Naeser's group has already published some encouraging results in the peer-reviewed scientific literature.

Last June in the Journal of Neurotrauma, they reported the outcomes of LED therapy in 11 patients with chronic TBI, ranging in age from 26 to 62. Most of the injuries occurred in car accidents or on the athletic field. One was a battlefield injury, from an improvised explosive device (IED).

Neuropsychological testing before the therapy and at several points thereafter showed gains in areas such as executive function, verbal learning, and memory. The study volunteers also reported better sleep and fewer PTSD symptoms.

The study authors concluded that the pilot results warranted a randomized, placebo-controlled trial--the gold standard in medical research.

That's happening now, thanks to VA support. One trial, already underway, aims to enroll 160 Gulf War veterans. Half the veterans will get the real LED therapy for 15 sessions, while the others will get a mock version, using sham lights.

Then the groups will switch, so all the volunteers will end up getting the real therapy, although they won't know at which point they received it. After each veteran's last real or sham treatment, he or she will undergo tests of brain function.

Naeser points out that "because this is a blinded, controlled study, neither the participant nor the assistant applying the LED helmet and the intranasal diodes is aware whether the LEDs are real or sham. So they both wear goggles that block out the red LED light." The near-infrared light is invisible to begin with.

Besides the Gulf War study, other trials of the LED therapy are getting underway:

·      Later this year, a trial will launch for veterans age 18 to 55 who have both traumatic brain injury (TBI) and posttraumatic stress disorder--a common combination in recent war veterans. The VA-funded study will be led by Naeser's colleague Dr. Jeffrey Knight, a psychologist with VA's National Center for PTSD and an assistant professor of psychiatry at BUSM.

·      Dr. Yelena Bogdanova, a clinical psychologist with VA and assistant professor of psychiatry at BUSM, will lead a VA-funded trial looking at the impact of LED therapy on sleep and cognition in veterans with blast TBI.

·      Naeser is collaborating on an Army study testing LED therapy, delivered via the helmets and the nose diodes, for active-duty soldiers with blast TBI. The study, funded by the Army's Advanced Medical Technology Initiative, will also test the feasibility and effectiveness of using only the nasal LED devices--and not the helmets--as an at-home, self-administered treatment. The study leader is Dr. Carole Palumbo, an investigator with VA and the Army Research Institute of Environmental Medicine, and an associate professor of neurology at BUSM.

Naeser hopes the work will validate LED therapy as a viable treatment for veterans and others with brain difficulties. She foresees potential not only for war injuries but for conditions such as depression, stroke, dementia, and even autism.

"There are going to be many applications, I think. We're just in the beginning stages right now."

http://www.sciencedaily.com/releases/2015/04/150402161648.htm