It is quite a satisfying thought when you imagine that your doctors know everything. In most cases, yes, our doctors know everything. But there are a few things that they don’t have the best information for and in this case had been somewhat stumped. Brain injuries are one of those many things that doctors are not able to say much about when they are posed with deep questions.
The Black Box?
David Ryser, who takes care of Intermountain Medical Center Neuro-Specialty Rehabilitation Unit in Murry as a medical director, has used the term “black box” when defining the practice of various clinicians when it comes to rehabilitation for patients with brain injuries.
He says that you will hear the clinicians say that rehabilitation has worked for a patient, but according to him this information is not enough. There is a lot of stuff hiding underneath that term that cannot be answered specifically. The biggest problem for researchers has been to find out that exact process amongst hundreds of processes going on as part of the rehabilitation and say that this process has worked.
Enter Practice Based Evidence
A big research project was started seven years back by professor of biomedical informatics at the University of Utah, namely Susan Horn, and David Ryser. Susan Horn is also known for giving rise to “practice based evidence.” The study was published two months ago from now and 2000 subjects were part of the research. These subjects were scattered around 10 rehab centers in various regions.
The rehab centers that were included in the study were not only in the US but Canada too. One of those patients was Greg Nordfelt who had been a great motorcyclist in Salt Lake. He is a banker and is 53 years of age right now. Having a bad stomach one day, Greg fell off his Harley Davidson in Idaho and because of injuries to his skull and left brain, his life stopped right there.
Intermountain Medical Center was the place where he was brought after his accident and in addition to the brain injury, he had also received serious injuries to his legs. Greg tells by recalling that the first thing he did when he was brought to his senses after two weeks of being on the bed unconscious was follow the instructions of the staff at the center for therapy. He received immediate physical therapy in addition to occupational and speech therapy. He went through several processes just like any other patient like him does.
- The Butterfly Puzzle Example of Success
He recalls being given a puzzle of just 4 pieces. When you joined all the pieces of the puzzle together it was a butterfly. He recalls this incident and cries with tears when he explains that he could not put such a simple piece of puzzle together for so long. Finally, when he was able to put the pieces together, he had found out that it was a butterfly. However, it was even more shocking for him when he could not tell the doctors what he was seeing on the completed puzzle – a butterfly.
- 50,000 TBI Deaths Per Year
Traumatic brain injuries are a huge problem for the country because 50,000 deaths in just one year in 2010 is not something to be taken for granted. (Read more.) According to several experts from CDC, it was suggested that more studies be conducted so all the things that had been missing in the previous studies or were not answered could be answered. The health effects of traumatic brain injuries are many including physical, cognitive and mental. These effects may change completely from one patient to another.
The Many Factors Involved in TBI Treatment
Why it is nearly impossible to pinpoint the working factors in a rehab is because of hundreds of factors involved in it. Think about the factors that make one patient different from another patient: his age when he received brain injury, the intensity of the impact, the damages of the brain injury, the treatments he is receiving etc. Horn explains the question about rehabilitation by saying that when you ask this question the person who is supposed to answer is clueless.
The answerer just thinks that it is impossible to pinpoint one thing out of hundreds and thousands. He said that practice based evidence might be the only thing that could allow clinicians to answer such questions. He said that using practice based evidence is more about collecting loads of data about the rehabilitation of patients while working on all of them together.
After collecting the data the modern statistical techniques are used in order to find out the most effective processes. Nordfelt was one of the many patients who went through therapy and rehabilitation after brain injury and every dot of the information about their rehabilitation was jotted down.
They were keeping records of everything that he was going through from his speech therapy hours to the type of food he was being given through tubes. 1000 clinicians produced notes and records about sessions that amounted to a total of 350,000. This was huge data and such large amount of data was never produced in the past for rehabilitation of brain injury patients.
The study was summarized on 14 papers and according to the main points mentioned in its published version
- The time interval between the injury and rehabilitation should be as small as possible for the best results. According to Ryser, his team is always in touch with the ICU to get the patients admitted to rehabilitation as soon as possible.
- Intensity of the therapy was given higher priority and preference than its length and amount. Most of the patients are taught to sit up and move around on the bed only. Such practices help the patients recover faster from their cognitive and motor related troubles.
- It was also deduced that feeding tubes play a huge role in the fast recovery of the patient. According to Ryser, taking care of feeding tubes is often a troubling task for the staff but it was proved that it mattered a lot. It was mentioned in the report that providing diet that was high on proteins really helped the patient a lot and at least 25% of the total diet during their entire stay should be composed of such high protein diet.
While such studies can really change how the patients with severe brain injuries are treated, they are not easy to conduct due to several limitations. The biggest limitation to such researches and studies is of the finances. Just for this particular study it cost nearly $7 million that was raised through grants. Another limitation to the study is how hard it is.
The study is not easy and so only serious professionals could conduct such a thorough study again. Nordfelt is very thankful to the staff of Intermountain and from the fact that he was dealt by Intermountain in just the right way that worked for him. He said that Intermountain and similar rehabilitation centers should be appreciated to work with more aggression on their patients because he feels that he was given his life back only because of Intermountain’s aggressive and quick efforts.
Nordfelt has now volunteered at Intermountain with his wife and he says he will not leave any opportunity of giving back to the institution that did so much for him. Ryser says that after such a study and its results, practice based evidence has finally received some recognition that it deserved.
He said that brain injury and psychiatry related rehabilitations are the places where practice based evidence is the only way to analyze data and reach a result whereas randomized controlled trials have not helped much in these cases. Horn said that NIH has always been reluctant in accepting practice based evidence but things might change in future.
According to Horn, they will be compelled to accept practice based evidence because randomized controlled trials have produced the same information over and over and they might not be left with any other option than accepting practice based evidence as the effective way of researching.