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Survival after TBI:

More than a million and a half people have traumatic brain injuries (TBIs) every year. But, not all of them need inpatient rehab. The information here is about those people who have gone through rehab and what we have been able to learn about their life expectancy.

What makes this study special?

  1. It is large. It tracked 2140 people who had inpatient rehab at 15 TBI Model System programs. These programs are funded by the US government to do research because of the size and quality of their programs. The average age of the people we studied was 37 years at the time they were injured. 75% were men and 60% were white. 62% had been injured in car crashes, 20% by violence, and 16% from falls and other causes. Most stayed in rehab about 30 days, and most were discharged home. Only 6% went to nursing homes.
  2. It covers a lot of time. Many other studies focus on the first year after injury when death rates are usually higher. This study looks at people who had TBIs between 1988 and 2000 - a total of 12 years.
  3. It goes beyond the hospital. Many people don't stay in touch with their rehab programs over the years. We found out if "lost" people were still alive through the Social Security Administration.
  4. It compared people with TBI to the general population. Statisticians have already calculated how many people of a particular age, sex, or race you would "expect" to die in the general population during a particular time period. We compared these numbers to what actually happened in our group of people with TBI.
  5. It identified factors that seem to affect people's life expectancy. We looked at things like:
  6. characteristics of the person
  7. circumstances of the injury
  8. other injuries, complications or operations the person might have had while hospitalized

How did TBI affect survival?

We tracked 2140 people who been discharged from rehab and lived at least one year following their injury. In a group of this size, age, sex, and race in the general population, you could expect about 60 people to die. In our group of people with TBI, we found that 123 had died. That's a death rate of about 5.7% -- or twice that of the general population. On average, having a TBI lessens life expectancy by about 7 years. Of course, your life may not be shortened this much.

What were the things that could lessen survival?

Many different factors played a role. We found that all of these could have some effect on survival:

  1. a suicide attempt before the TBI.
  2. having been arrested before the TBI.
  3. having less education at the time of injury.
  4. being severely intoxicated when injured.
  5. being injured by violence.
  6. having a seizure, high brain pressures, or needing a shunt during initial hospitalization.
  7. not being discharged to home after rehab.
  8. having more severe cognitive and physical disabilities.
  9. being older when you are injured.
  10. being more severely disabled when you are discharged from rehab.
  11. being unemployed before your injury.

But when all of these factors were considered together, and re-analyzed, we found that the last three things on the list were what affected life expectancy the most:

  1. being older when you are injured;
  2. being more severely disabled when you are discharged from rehab; and
  3. being unemployed prior to your injury.

What does this mean?

  1. Many researchers have found that being older when you are injured makes it harder. It is harder to survive the initial injury, and it is harder to recover. Older people don't always do as well as younger people. But remember: older people who DON'T have TBIs also don't do as well as younger people. This is just a fact of life. What can you do? Don't neglect normal medical care - like cancer screening, cholesterol management, prevention of osteoporosis, even dental care.
  2. It makes sense that the more severe your disability is, the more it affects your survival. Even in the years after your rehab, disability puts you at risk. You may have medical problems that haven't gone away. You may be more susceptible to other complications. What should you do? Take care of your health. Get treatment if you see an old problem coming back or a new one appearing. Keep yourself active physically and mentally. Even if you have a severe disability, keep trying to lessen it. Researchers now believe that lessening disability leads to a longer life!
  3. Why do people who were employed do better? First, most employed people are "healthy." Some unemployed people are unemployed because they are "not healthy." Unemployed people have less money, and people who are poorer have higher death rates. And, employed people may be more active. They also are more likely to have a stable home, good resources, and support after they are injured. They are apt to get better medical care. All of these things might help increase their survival. What can you do now? You can keep striving for the things that help employed people do well - good health, a secure home life, and an active, stimulating lifestyle.
  4. Finally, and most important, being two times more likely to die does NOT mean that you will die twice as soon or only live half as long. What it really means is this: Because of your TBI you may be twice as likely to have a life that is a few years shorter than your peers

What should you be aware of about this study?

  1. 12 years is a long time, but it is not that long compared to how long a lifetime is. We still need studies that follow people 30 and 40 years after injury. Craig Hospital is beginning just such a study.
  2. As with any large study, we were not able to get information on all of the people who were eligible.
  3. All we had to make comparisons to the general population were age, race, and sex. Comparing on financial status, and other factors, might have provided more useful information.
  4. We don't know what was going on in these people's lives at the time they died. Did they have family support and medical care? What did they die from? Another study has just started to look into the causes of death in this same group of people with TBIs. Watch for another brochure.

How to find more info:

There are many websites you can go to that have information on mortality and survival. Some help you calculate your own possible survival. If you're interested you can do an internet search on "life expectancy," or "life expectancy calculators," and check them out for yourself. Beware: some are very technical, and few of them take TBI into account.

In addition to the life expectance calculator you can click to at the end of this article here another Website you might want to visit. It has several different life expectancy calculators : http://www.findhealthproducts.com/Health/Aging/LifeExpectancy/Calculators

The first link you'll find on this web page is to Northwestern Mutual Life: the Longevity Game. You might want to try this one first. It's easy, and it gives some good information along the way. After you have completed it once and gotten your life expectancy, go back and re-take it again. Each time, change an answer for a question that asks about something that you might be able to change in real life. For example, you could possibly change your weight, so enter your weight at 10 or 20 pounds less than it really is, and see how that increases your life expectancy. Change some of your answers to questions that have to do with diet, and see what effect that has. Or, if you are a smoker, click on "former smoker," to learn the effect of quitting smoking. This will let you see how you can increase your life expectancy by changing some of the things that you do now.

Finally, there will be an article in a medical journal about the research we told you about in this brochure. It will be printed in Neurorehabilitation, in early 2004. Its title is" Mortality Following Rehabilitation in the Traumatic Brain Injury Model Systems of Care." The reference to this article is Harrison-Felix, C., Whiteneck, G., DeVivo, M., Hammond, F.M., Jha, A. Mortality Following Rehabilitation in the Traumatic Brain Injury Model Systems of Care. NeuroRehabilitation 2004;19(1):45-54.