Outcomes for People in Disorders of Consciousness

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What do we know about outcomes for people in disorder of consciousness?
With Joseph Giacino, PhD

Lower Third
Joseph Giacino, PhD
Project Director
Spaulding-Harvard Traumatic Brain Injury Model System

There's a lot of misperception, misunderstanding when it comes to our understanding of how people recover from severe, if not catastrophic brain injury where a person has a prolonged period of disturbance in consciousness, either unconscious entirely or minimally conscious for an extended period of time. What do I mean by that? I mean as long as a month or even longer where any of those behaviors I talked about before or disorders are still prevalent. So there is still a prevailing belief that if one does not recover consciousness — usually command following is what people mostly look for — within the first week, maybe stretching it to the first two weeks, the belief is that that's testament to poor outcome down the line. They're not going to get much better. We now know that to be absolutely not true because we have long-term studies that go out well beyond the year and find that those individuals who have remained in a disorder of consciousness even across the first month or more, if you follow them past a year, even out to 10 years, 20% of those individuals get better to the point where they are functionally independent. They don't need someone else to provide daily care for them.

Now that's that 20%. Then we have, the other 80% is comprised of individuals who, a small percentage who have not improved really at all. That's really a small percentage. And then the remainder of that, probably 70%, are people who have regained some partial independence or function that may not reach the point of independence, but they're engaged, they're interactive, but they do need help every day. But I think we can't lose sight of the fact that we're talking about one in five people who have had a catastrophic injury have not awakened, if you will, within the first two weeks, who will make that very robust recovery, get to the point of functional independence.

The other thing I think that's really important that is relatively recently learned is that the trajectory of recovery is not stable. Once it used to be thought that you get to a year post-injury and recovery plateaus. People are about where they're going to be at a year. We now know convincingly from long-term studies, many of them conducted by centers involved in the traumatic brain injury model system program that if you follow people from one year out to 10, 15 years, we find that you have about 30% of people who do continue to improve over that timeframe, about another 20 to 30% who show decline, and then that middle third are staying about the same.

But if you put all that together, that means about 70% of people are not stable. They're either getting better or worse over time. It's the minority that actually stay the same in those out years from a year down to a decade or more. And that's really interesting. We don't know what accounts for the trajectory that any given person sets off on. And that's the subject of a lot of research now trying to understand what is behind that. Is it initial predisposing factors that the person brings to the table? Is it the type of care they got? We don't know those answers yet, but it's going to be essential to figure out what are the drivers for putting you on the ascending course, the plateauing course, or the declining course.