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Basic Care and Condition Materials

These websites provide consumer education sheets on care and medical information for individuals with spinal cord injuries. Here you’ll find family-friendly material on subjects ranging from caregiving, coping, and adjustment, to medical information on skin care, bladder and bowel care, tips for returning to work and selecting a wheelchair, and other pertinent information. These materials undergo expert and consumer reviews to ensure they are up-to-date, evidence-based, and consumer-friendly.

Acute Management of Autonomic Dysreflexia: Individuals with Spinal Cord Injury Presenting to Health-Care Facilities (Paralyzed Veterans of America, 2001)

Autonomic dysreflexia (AD), with its sudden and severe rise in blood pressure, is a potentially life-threatening condition that can occur in anyone with a spinal cord injury at or above thoracic level six (T6). The resolution of AD requires quick and decisive treatment. Spinal cord medicine health-care providers are very familiar with the diagnosis and treatment of AD. However, because of the rapid onset of AD and the potentially severe symptoms, individuals with this condition are often rushed to the nearest health-care facility that may be staffed by health-care providers who have little or no experience in the treatment of AD. This is a free electronic publication.

 
Adaptive Sports and Recreation

For people with spinal cord injuries, adaptive sports and recreation may be key to lifelong wellness. Without such activity, people with spinal cord injuries maybe be at higher risk for physical and mental health problems, such as obesity, heart disease, and depression. Read this factsheet to learn more about the health benefits of adaptive sports and recreation after spinal cord injury. 

Adjusting to Life after Spinal Cord Injury

Having a spinal cord injury is without doubt a new and challenging situation. SCI affects almost every aspect of your life when it happens, and it can be hard to put life back in order and adjust to living with SCI. This initial adjustment period may be hard, but most people adjust well in time. Then, they continue to adjust to ongoing changes in life similar to those that everyone experiences.

American Association of Neurological Surgeons

Founded in 1931 as the Harvey Cushing Society, the American Association of Neurological Surgeons (AANS) is a scientific and educational association with over 8,000 members worldwide. The AANS is dedicated to advancing the specialty of neurological surgery in order to provide the highest quality of neurosurgical care to the public. The Patient Information tab on the main toolbar, provides a wide range of consumer information on Conditions and Treatments.    

American Spinal Injury Association (ASIA)

ASIA establishes and promotes standards of excellence for all aspects of health care of individuals with spinal cord injury from onset throughout life. One of ASIA’s primary missions is to educate members, other healthcare professionals, patients and their families as well as the public on all aspects of spinal cord injury and its consequences in order to prevent injury, improve care, increase availability of services and maximize the injured individual’s potential for full participation in all areas of community life. The Public Information link on the left toolbar provides a variety of consumer education information on durable medical equipment, clinical trials, and general guidelines for selecting SCI rehabilitation programs.

 

 

ASIA Impairment Scale

The ASIA impairment scale classifies motor and sensory impairment that results from a Spinal Cord Injury.  It divides spinal cord injuries into 5 categories, A-E, with optional clinical syndromes.

The ASIA Impairment scale is another helpful guide to understanding an injury, It was developed by doctors at the American Spinal Injury Association (ASIA) to categorize the extent of an injury in terms of the degree of damage to the spinal cord.

If the injury is “complete,” (ASIA A) it means that no messages can travel across the location of the injury to the brain. However, “incomplete” injuries, which mean that some messages can still get through, are classified as ASIA B, ASIA C or ASIA D, depending on amount of movement and feeling that remain below the level of the injury.

Autonomic Dysreflexia

Autonomic Dysreflexia (AD), sometimes referred to as Autonomic Hyperreflexia, is a potentially life-threatening medical condition that many people with spinal cord injury experience when there is a pain or discomfort below their level of injury, even if the pain or discomfort cannot be felt.

Autonomic Dysreflexia Wallet Card – Christopher and Dana Reeve Foundation

It is important to become knowledgeable about Autonomic Dysreflexia (AD) if you have a spinal cord injury at the T6 level or above. AD can cause a medical emergency and even be life threatening. This emergency wallet card provides crucial information regarding Autonomic Dysreflexia for spinal cord injury survivors, their family, and emergency response professionals. There are two versions; an adult card in dark blue and a pediatric card in light blue — please note the difference in the medication dosages.

Being Your Own Advocate: Living with a Disability or Chronic Illness

Learning to advocate for yourself or loved one is an important step in coping with a disability or chronic illness. This consumer education sheet from the Rehabilitation Institute of Chicago provides some basic tips to help you and others gain a sense of empowerment.

Bladder Management Options Following Spinal Cord Injury

A spinal cord injury might limit one’s ability to control urine. One might not be able to stop urine from flowing, or might not be able to release it. Uncontrolled urination or inability to empty your bladder can have a negative effect on quality of life, cause bladder and kidney infections and other problems. Appropriate bladder management can help keep bladder and kidneys healthy.

Bowel Function After Spinal Cord Injury

A bowel program can help one to control bowel movements after a spinal cord injury. Following a bowel program can help someone avoid other problems and perhaps bowel surgery. It is a plan to retrain one’s body to have regular bowel movements. A doctor or nurse designs a bowel program specific to an individual based on health, personal history, a physical examination and other factors.

BrainandSpinalCord.org

Sponsored by Newsome Melton, LLP, BrainandSpinalCord.org is a resource to help brain and/or spinal cord injury survivors and their families learn more about medical conditions, rehabilitation, and legal options that can support long-term financial stability.

Depression and Spinal Cord Injury

Depression is not an inevitable part of living with SCI though many in the SCI population – about one in five people – may experience this. This consumer education sheet describes depression, its causes, symptoms, and treatment. A depression self-test is also included to help one understand the extent of their depression and potential concern to get help.  This education sheet can also be downloaded in Spanish.

Driving After Spinal Cord Injury

One may be able to continue driving safely again, depending on how serious the injury is and how much function has been regained. The amount of time after an injury is a major factor in deciding whether and how one can return to driving. With time, one may regain some functions that could make driving possible. With time, the amount and cost of any needed special equipment may be reduced. 

Early Acute Management in Adults with Spinal Cord Injury: a Clinical Practice Guideline for Health-Care Professionals (Paralyzed Veterans of America, 2008)

This Clinical Practice Guideline was created by Consortium for Spinal Cord Medicine.  It was designed to guide health care professionals in trauma centers, ICUs and hospitals in providing care during the first 72 hours after spinal cord injury.

 
Eat Well, Live Well with Spinal Cord Injury: A practical guide to help individuals with spinal cord injuries address secondary health complications in SCI through nutrition (2013)

It is common for individuals with spinal cord injuries to experience multiple nutritional deficiencies. Eating the right foods becomes even more crucial to meet your body’s increased nutrient needs fight after injury, during rehabilitation and throughout your life. Funded by the Paralyzed Veterans of America, Eat Well, Live Well with Spinal Cord Injury is a comprehensive, practical nurtritional guide written specifically for individuals with spinal cord injuries, as well as their families, friends, caregivers, health and medical professionals.

Employment after Spinal Cord Injury

Most people with spinal cord injuries (SCI) want to work yet need support, training, and vocational rehabilitation services to help them obtain and keep a job. This consumer education sheet identifies sources of support that may help to overcome many barriers that are outside the individual’s control, such as financial and health care issues, accessibility, and employer attitudes. 

Exercise after Spinal Cord Injury

People with spinal cord injuries are more likely than the general population to have health problems related to weight gain, changes in cholesterol, and high blood sugar. People with spinal cord injuries are also at higher risk of cardiovascular disease and not being active may contribute largely to these problems. Read this factsheet to learn more about the possible health benefits of exercise after spinal cord injury.

Hiring a Caregiver

It is natural to be worried and overwhelmed when needing to hire someone for help with personal care. This consumer education sheet from the Rehabilitation Institute of Chicago LIFE Center, can help you better understand how to start, what to ask, and how to know if someone will provide what is needed.  Pros and cons for using a home health care agency, employment agency, or hiring a caregiver on your own are outlined along with caregiver interviewing tips.

LIFE Center – Shirley Ryan AbilityLab

The LIFE (learning, innovation, family, empowerment) Center at the Shirley Ryan AbilityLab is a premier family and professional resource center designed to support the life-long needs of people with disabilities, their families, and the community. The LIFE Center’s extensive consumer education and community resources, spans over 7,000 peer reviewed sources of help centered on key life needs for families and individuals living with a spinal cord injury. The online collection includes local, regional, national, and international agencies and extensive consumer education sheets. Topics include medical information and care, caregiving and equipment, housing and transportation, education and employment, support and wellness, recreation and leisure, finance and law, and inspiration and hope. Links to support groups, government disability programs, home care, medical equipment, and other assistive technology providers are also provided.

Living Wills and Powers of Attorney for Health Care: An Overview

Taking time to outline your interests regarding the type of treatment you would like or would not like, along with identifying someone whom you trust to oversee your care will help ensure that your wishes are attended to in the event you are not able to communicate for yourself.  This consumer education sheet is provided by Nolo.com; one of the Internet’s leading legal websites. This overview describes what’s involved and why it is important to prepare Living Wills and Powers of Attorney for Health Care, who can make the health care documents, when it takes effect and when it ends, and how the documents can be revoked. This website provides additional information on a variety of aspects of advanced care planning to ensure your wishes are directed according to your desires.

Maintenance Guide for Users of Manual and Power Wheelchairs

Wheelchair maintenance can reduce wheelchair breakdowns and related consequences, as well as costs for repairs and replacements. This guide provides basic details on inspecting and maintaining wheelchairs. 

Mayo Clinic – Spinal Cord Injury

The Mayo Clinic is a nonprofit worldwide leader in medical care, research and education for people from all walks of life.  Their spinal cord injury resource page outlines the basics of Spinal Cord Injury and important information on initial treatments and rehabilitation. Click on Coping and Support to find resources and information on living with a spinal cord injury.

 

Medicine.Net: Spinal Cord Injury Treatment and Rehabilitation

MedicineNet.com is an online, healthcare media publishing company. It provides easy-to-read, in-depth, authoritative medical information for consumers via its robust, user-friendly, interactive website.  Their Spinal Cord Injury Treatment and Rehabilitation section provides basic, trustworthy medical information.

MedlinePlus Spinal Cord Injury

MedlinePlus brings together authoritative information from NLM, the National Institutes of Health (NIH), and other government agencies and health-related organizations to give easy access to medical journal articles, information about drugs, an illustrated medical encyclopedia, interactive patient tutorials, and latest health news. The section on spinal cord injuries provides specific information on diagnosis, tests, prevention, and treatment as well as videos and tutorials, statistics and research, clinical trials, and journal articles.

 

Miami Project to Cure Paralysis

In 1985, Barth A. Green, M.D. and NFL Hall of Fame linebacker Nick Buoniconti helped found The Miami Project to Cure Paralysis after Nick’s son, Marc, sustained a spinal cord injury during a college football game. Today, The Miami Project is a comprehensive spinal cord injury research center, housed in the Lois Pope LIFE Center, a Center of Excellence at the University of Miami Miller School of Medicine. The Miami Project’s international team of more than 200 scientists, researchers and clinicians take innovative approaches to the challenge of spinal cord injury. The website’s Living with Paralysis section provides provides exceptional consumer education on Spinal Cord Injury 101Care and Resources, Experimental Treatment, Webinars, and Statistics. The Healthy Living section provides additional information on diet and nutrition, exercises, sports and leisure, and stretching.

Michael Brent Resource Center at Frazier Rehabilitation Institute

The Michael Brent Resource Center at Frazier Rehabilitation Institute was established in 2010 to address the needs of individuals and their families from the onset of spinal cord impairment and continuing throughout the life cycle.  Its mission is to provide a central location where educational books, DVD’s, CD’s, pamphlets and other educational materials are housed for inpatient, outpatients, families, staff, students and others to come and learn about spinal cord impairment.  The Center also provides a location for inpatients, outpatients and those in the community to meet and network with the agencies that serve them. 

 

 
Model Systems Knowledge Translation Center

The Model Systems Knowledge Translation Center (MSKTC) summarizes research, identifies health information needs and develops systems for sharing information for the National Institute on Disability Rehabilitation Research (NIDRR) model systems programs in traumatic brain injury, spinal cord injury, and burn injury. The Spinal Cord Injury tab at the top takes you to a page with a listing of what the website has to offer, including a factsheets, slideshows, and hot topic modules as well as quick reviews of research that is funded by the NIDRR, and a database of research publications from the Model Spinal Cord Injury Systems since 1991. 

National Rehabilitation Information Center

The National Rehabilitation Information Center (NARIC) is the library of of the National Institute on Disability, Independent Living, and Rehabilitation Research (NIDILRR). This extensive collection includes all articles, reports, curricula, guides, and other publications and products of the research projects funded by NIDILLRR. Disability Resources are additionally arranged by subject to help patrons find agencies, organizations, and online resources for treatment, benefits, and services. 

 

Neurotrauma Law Nexus

This website was created by the Fick & May law firm as a source for understanding legal issues associated with brain and spinal cord injuries. This site is also provides information on the anatomy of the spinal cord and some of the injuries that can affect it. The interactive map of the spinal cord is a comprehensive tool for finding basic information concerning specific parts of the spinal cord and the effects of injuries to those parts.

 

Next Step in Care

The United Hospital Fund, which is based in New York, created this website to help improve patients’ transitions to different types of care facilities. The site is packed with resources for every step of caring for a loved one, from hospital admission to discharge and beyond which apply regardless of your location. The online Family Caregiver’s Guide to Care Coordination helps family identify ways to work together with professionals with tips on staying organized, especially when professional care ends. 

 

Pain after Spinal Cord Injury

Pain is a serious problem for many people with spinal cord injuries (SCI). Pain after SCI can occur in parts of the body where there is normal sensation (feeling) as well as areas that have little or no feeling. The pain is very real and can have a negative impact on quality of life. A person in severe pain may have difficulty carrying out daily activities or participating in enjoyable pastimes. Follow this link to learn more about the different types of pain many experience after SCI, and the ways it is can be treated. 

Paralyzed Veterans of America

The PVA’s mission is to improve the quality of life of its members by advocating for improved health care, research, education and awareness of disability rights and programs for veterans. The website focuses primarily on injured veterans; however, the information on disability rights and sports and recreation applies to veterans and non-veterans alike.

Personal Care Assistants – How to Find, Hire and Keep Them

This section, found on the Craig Hospital website, offers suggestions on how to deal with a personal care assistant (PCA). There are tips on saving money, organizing and evaluating your needs and tips on keeping your PCA happy and responsible.

Personal Care Attendant

This consumer education sheet, developed through the Medical University of South Carolina’s Office of Research, discusses key points for finding, interviewing, educating, and training a personal care attendant (PCA). It also outlines top 10 reasons why PCAs quit their jobs with helpful hints for developing a positive working relationship.

Pregnancy and Women with Spinal Cord Injury

Having a spinal cord injury (SCI) does not affect your ability to naturally become pregnant, carry, and deliver a baby, so your decision to have children is made in much the same way as anyone else. You consider the demands and challenges of parenting and how you might manage them. Here are other facts to consider when deciding whether or not you want to have children.

Preservation of Upper Limb Function Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals by Paralyzed Veterans of America (2005)

This free online guideline is designed to educate health-care professionals and persons with spinal cord injury on the risk of upper limb pain and injury, including recommendations for assessment, management, and monitoring. Published by Paralyzed Veterans of America on behalf of the Consortium for Spinal Cord Medicine.

Respiratory Health and Spinal Cord Injury

A spinal cord injury can impact the respiratory system. Signals sent from your brain can no longer pass beyond the damage to the spinal cord, so your brain can no longer control the muscles that you would normally use for inhaling and exhaling. The extent of your muscle control loss depends on your level of injury and if there is complete or incomplete spinal cord damage.

Respiratory Management Following Spinal Cord Injury: A Clinical Practice Guideline for Health-Care Professionals by Paralyzed Veterans of America (2005)

This free online guide, created by the Consortium for Spinal Cord Injury Medicine, answers many of the questions about respiratory health that may arise after a spinal cord injury. 

Safe Transfer Technique

Transferring in and out of a wheelchair puts higher stress on arms and shoulders than anything else one may do on a regular basis. Learning the correct way to transfer is extremely important in order to keep  arms functioning and pain-free. This factsheet from the Model Systems Knowledge Translation Center is also available in Spanish.

SCI Guide

Created by the New England Regional Spinal Cord Injury Center (NERSCIC) at Boston Medical Center, the SCI Guide brings together online resources selected by people’s feedback from the SCI community.

Sexuality & Sexual Functioning After Spinal Cord Injury

Loss of muscle movement, sense of touch, and sexual reflexes often occurs after spinal cord injury (SCI). How this loss affects arousal, orgasm, and fertility depends on your level of injury and whether your injury is complete or incomplete.

Skin Care and Pressure Sores in Spinal Cord Injury

A pressure sore is an area of the skin or underlying tissue (muscle, bone) that is damaged due to loss of blood flow to the area. They are the most common and sometimes life-threating medical complication of spinal cord injury. This consumer education sheet comes from the Model Systems Knowledge Translation Center and is part of a six-part series on skin care which can be explored on the right side of this page. Topics include Causes and Risks, Prevention, and Building Skin Tolerance.

Social Security Disability Benefit Overview

This consumer education sheet provides a general overview of social security disability benefits, the eligibility requirements, application process, medicare benefit availability, appeal process, and reasons why benefits could be terminated.

Spasticity and Spinal Cord Injury

Spasticity is the uncontrolled tightening or contracting of the muscles that is common in individuals with spinal cord injuries. About 65%–78% of the SCI population have some amount of spasticity, and it is more common in cervical (neck) than thoracic (chest) and lumbar (lower back) injuries.

Spinal Cord Injuries Australia

Spinal Cord Injuries Australia is an international resource that promotes independence, and continues today with a proud history of providing consumer based support and rehabilitation services to people with physical disabilities. They aim to create a society without barriers for people with spinal cord injuries. SCI resources include information on Access and Public Toliets, Clothing and Fashion, Employment and Eduction, Equipment, Technology, and Wheelchairs, Financial and Legal matters, Health and SCI facts, Housing and Home Modification, and Transport and Travel.

Spinal Cord Injuries: Areas of Research – Topic Overview

This section of WebMD provides an overview of several types of research on spinal cord injuries. Some of them may be at the point where people with SCI’s are using them on a trial basis. Others might still be in the animal-study stage. They all have the potential to lead to a return of some feeling and movement in paralyzed areas.

Spinal Cord Injury and Gait Training

People with an “incomplete” SCI have more potential to regain walking than those with a “complete” SCI, but people with both types of SCI may have gait training included in their therapy plans if deemed appropriate by their treatment team. Each individual makes progress in therapy at his/her own pace. Some people may learn to walk well in a few months; others may take years to be able to walk just for exercise. Still others may never undergo gait training.

Spinal Cord Injury Directory from WebMD

WebMD is a trusted source for objective, trustworthy, and timely health information. The website’s section on Spinal Cord Injuries Directory provides a medical reference for spinal cord injury and pain and useful articles on life with a spinal cord injury.

Spinal Cord Injury Guide

The Boston Medical Center created The Spinal Cord Injury Guide to give the Spinal Cord Injury community a place to go to get trusted, peer-reviewed information, and to rate the best. The Spinal Cord Injury Guide brings together websites on Spinal Cord Injury chosen by people with spinal cord injuries for people with spinal cord injuries.

Spinal Cord Injury Model System Information Network – University of Alabama

The University of Alabama at Birmingham Spinal Cord Injury Model System maintains an extensive information network of spinal cord specific resources. The fact sheets offer quick references to basic spinal cord injury health information. Daily Living topics provide consumer education on Adjustment, Assistive Technology, Caregiving, Family & Relationships, Health Management, Home Modification, Leisure, Mobility, Nutrition, Sexuality, School, and Work. Additional Rehab Tip Sheets provide information on common activities, such as wheelchair positioning, assisted pressure relief, lift transfers, assisted transfers and bed positioning. SCI Health Education Videos are also available for a vairey of secondary conditions.

 

Spinal Cord Injury Zone

Calling itself a “knowledge base,” the Spinal Cord Injury Zone provides news and information on Spinal Cord Injury-related issues. Here you’ll find facts and answers to common questions about Spinal Cord Injury, medical issues and daily life. The videos offered are good educational and inspirational tools. The mission of The Spinal Cord Injury Zone is to archive important Spinal Cord Injury News and Spinal Cord Injury Information for education and awareness.

 

Spinal Cord Injury: A Guide for Patients and Families, Dobkin, Bruce M.D. and Michael Selzer M.D (Demos Health, 2008)

This well-written, reliable overview of traumatic spinal-cord injury and its treatment is essential reading for all patients, family members, and caregivers who want a better understanding of the condition. In simple, everyday English, it explains the anatomy of the spine, the results of injury, and treatment and management issues encountered during rehabilitation. A glossary of commonly used terms and website resources offer tools for further study, while the latest scientific research helps patients make informed medical decisions that promote optimum healing.

Spinal Cord Injury: Hope through Research

Published by the National Institute of Neurological Disorders and Stroke, this online pamphlet provides an overview of spinal cord injury describing how the spinal cord works, what happens when it is injured, how injuries are diagnosed and classified and how rehabilitation helps with recovery.

Spinal Cord Injury: Surgery & Treatment

Information on various surgery and treatment for spinal cord injury is available on the UC San Diego Health System’s spinal cord injury website. Topics include surgical and nonsurgical treament such as nerve and tendon transfer, selective peripheral neurotomy, phrenic nerve stimulator, and spinal cord stimulation. 

Spinal Cord Injury: The First 90 Days, Sam Maddox (2018)

“Spinal Cord Injury: The First 90 Days,” by Sam Maddox, is a free guide to acute SCI. There are two editions, one for the ten-county, 23 million population Southern California area, and one for the eight-state Rocky Mountain region. The book explains insurance coverage, rehabilitation best practices, self-care and coping strategies, expected outcomes, assistive technology and equipment, home modification and the steps needed to return to the community. It also offers an overview of legal rights and legal options in the event an injury may have been caused by someone else. 

Surgical Alternatives for Bladder Management Following Spinal Cord Injury

The ability to control urine release may be limited because of injury. Surgery can sometimes be used to help manage these problems if nonsurgical bladder management approaches do not work. To learn about the problems caused by your injury and the strategies used to help you manage bladder problems follow this link or read Bladder Management Options Following Spinal Cord Injury.

Types Of Wheelchairs – A Visual Tour

This guide from the United Spinal Association outlines the many types of wheelchairs available from manual and power, to sport and all terrain.

Understanding Spinal Cord Injury – Two Part Series

These factsheets are intended to be a starting point for understanding the normal functions of the spinal cord and how those functions might change after spinal cord injury (SCI). The impact of injury is different for everyone, so it is impossible to answer every question of interest. However, these fact sheets will answer a few common questions.

While it is not possible to teach you all there is to know in a single handout, these two factsheets include some of the most important information.

Understanding Spinal Cord Injury – Video Resource

Understanding Spinal Cord Injury is a video resource developed by the Shepherd Center, a Spinal Cord Injury Model Systems rehabilitation center.  Here you can watch videos on the basics of Spinal Cord Injury and also hear stories from people who’ve been there. The Sheperd Center also provides consumer education on spinal cord injury anatomy with a glossary of terms you may hear, questions that families should ask their medical team, and other tips for coping, adjustment, and how to navigate the insurance maze through an online book “Understanding Spinal Cord Injury.”

United Spinal Association

Each year, United Spinal helps thousands of individuals living with spinal cord injuries or disorders overcome the daily challenges of living with a disability. With over 60 local chapters and suport groups nationwide, United Spinal Association connects people  with SCI/D to their peers and fosters an expansive grassroots network that enriches lives.  Free webinars are provided on a regular basis to help individuals and their families stay informed and connected to helpful resource information. The resource library offers useful links to services, articles and studies. Click on Chapters at the top toolbar to locate your state association.

 

Urinary Tract Infection and Spinal Cord Injury

This factsheet outlines the causes of urinary tract infections (UTI) and why they are so common in people with spinal cord injuries. Learn about the signs and symptoms of a UTI, as well treatment options and prevention. 

What is a Spinal Cord Injury Model System Center?

The Rehabilitation Institute of Chicago, describes the “Spinal Cord Injury Model System” and explains why it is important to you. A brief outline of criteria to become a model system in spinal cord injury as designated by the National Institute on Disability and Rehabilitation Research (NIDRR) is also provided. 

Working and SSDI Benefits

This consumer education article details the requirements for how much you can work and still maintain SSDI (Social Security Disability Income) benefits. The article also provides additional consumer education sheets on working and eligibility for Social Security Disability.

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