Read Full Text: Longitudinal study of postconcussion syndrome: Not everyone recovers (Free to access)
Journal: Journal of Neurotrauma
Year Published: 2017
Ranked 49th on our 2015-2020 list of the 100 most influential OT-related articles
CEU Podcast: Postconcussion Syndrome and OT with Devon Cochrane
This week, we are tackling a hot topic (and controversial diagnosis): postconcussion syndrome.
On one hand, postconcussion syndrome has a well-described pattern of symptoms.
But, on the other hand, we don’t know what causes it. Plus, because the symptoms are subjective, postconcussion syndrome has been very difficult to quantify and study.
Whether you work with kids or adults, at some point you’ll probably work with patients who’ve suffered concussions. This research will help you feel informed and confident when working with these patients. Personally, I also felt the research confirmed why OT is such a good fit for postconcussion care.
Let’s dive in.
What is postconcussion syndrome (PCS)?
Postconcussion syndrome is a common result of traumatic brain injury (TBI). It reportedly impacts around 5-43% of all concussed individuals.
While there are different definitions out there, this particular study characterized it as the persistence of any symptom beyond 3 months after the concussion.
Some of the most common symptoms include:
- Headache
- Difficulty concentrating
- Depression
- Fatigue
(Just from seeing this list, you should already be getting a sense of why this syndrome is hard to quantify, as the symptoms are also very common in the general population.)
There is no diagnostic biomarker of PCS, and there is also no evidence-based cure.
What causes PCS?
The exact cause is unknown, and theories range from biomechanical to psychogenic roots. Not knowing what causes the syndrome makes it difficult to set diagnostic criteria. As UpToDate says, test results may or may not be abnormal—and, even when they are abnormal, they do not seem to follow a set pattern.
It’s really no surprise that “PCS sufferers often feel frustrated and helpless due to the difficulty in diagnosis and absence of proven treatment.”
How did the authors hope to contribute to our understanding of PCS?
Given the current ambiguity about what exactly constitutes PCS, the authors’ intent was to “better characterize persisting PCS.”
Specifically, they wanted to determine the differences from those who eventually recovered from PCS and those who did not.
What were the authors’ methods?
The researchers identified 285 patients with the diagnosis of PCS, all of whom were all seen by a single neurosurgeon with a special interest in PCS. They were mailed a questionnaire on the topic of recovery.
Patients with evidence of change (such as a hemorrhage or contusion) on a CT or MRI were excluded from the study. Patients involved in litigation and/or showed a likelihood of malingering, as evidenced by failing the Test of Memory Malingering, were also excluded. Reminder: malingering is an intentional exaggeration of symptoms.
What symptoms did they examine in PCS?
I’m including the entire list of complaints so you can get a sense of the full constellation of possible symptoms of PCS.
I’m also listing them in the order of respondents’ most frequently to least frequently reported symptoms.
- Headache
- Difficulty concentrating
- Fatigue
- Dazed/don’t feel right/feeling in a fog
- Pressure in head
- Sensitivity to light
- Difficulty remembering recent/remote events
- Neck pain
- Sensitivity to noise
- Depressions/sadness
- Insomnia/sleeping too little or too much
- Irritability
- Anxiety
- Frustration
- Feeling slowed down
- Noise in the ears
- Vision changes
- Lightheadedness
- Imbalance
- More emotional
- Dizziness
- Nausea
- Increased sensitivity to alcohol
- Confusion
- Personality changes
- Vivid dreams
- Numbness
- Vertigo
- Panic attacks
- Disorientation
- Stomach ache
- Loss of appetite
- Slurred speech
- Seizures
- Vomiting
What were the results?
110 participants returned the questionnaire AND were not excluded by the criteria I listed above.
The average time since that patient had last had a clinical visit was 4.4 years.
Only 27% of respondents reported a full recovery from PCS. Of those that did recover, 67% did so in the first year.
No respondents identified a recovery once the symptoms had lasted beyond 3 years.
There was much more sophisticated analysis included in the article, which I encourage you to check out 
Which treatments were most effective?
The short answer is that no treatment showed definitive significance in influencing recovery. However, all of the major treatment options were found to be helpful by some.
The treatments explicitly asked about in the questionnaire included:
- Occupational therapy
- Physiotherapy
- Chiropractic manipulation
- Psychotherapy
- Medication
- Vestibular repositioning
There was a trend (that neared significance) showing that those who did recover found vestibular repositioning to be effective.
For those who did NOT recover, there was a trend (near significance) toward finding medication to be effective.
The survey also gave participants the option to write in treatments and indicate whether they found them to be effective. Here’s what that data looked like:
- Electrotherapy (1 found it effective/out of 1 person who listed it)
- Exercise (1/1)
- Homeopathy (1/1)
- Manual Lymphatic Drainage (1/1)
- Reiki (1/1)
- Repetitive Magnetic Stimulation (1/1)
- Vitamins (1/1)
- Yoga (1/1)
- Meditation/Mindfulness (3/5)
- Massage (5/12)
- Cranial-Sacral Therapy (2/5)
- Osteopathy (5/16)
- Acupuncture (3/13)
- Chiropractic Neurology (0/1)
- Myofascial Release (0/1)
- Naturopathy (0/1)
- Neuro-Postural Vision Therapy (0/1)
What did the authors conclude/discuss?
While the overarching conclusion is that we still have an incomplete understanding of the cause and course of PCS, the authors did share some interesting findings.
There seemed to be a pattern to how the symptoms appeared. There was a tendency for the patients with the same number of symptoms to have the same set of symptoms. (The heat map in the article is a great illustration of this.)
There was a strong association between the total number of symptoms and the length of time to recovery. Basically, the more symptoms the patient reported, the longer the path to recovery. Again, the authors pointed out that after 3 years with PCS, no patients reported a full recovery.
A note from OT Potential:
In my extra reading to prepare for this article, I thought it was important to share the emphasis that UpToDate places on education for this population. In their 2018 article, they state that early education may impact the course of PCS. As they said: “Many patients are reassured to discover their symptoms are not unique or crazy, but are instead part of a well-described syndrome”
Takeaways for OT practitioners
1. There seems to be a window of opportunity in the first year postconcussion—this really fits with what we know about neuroplasticity.
From our work with stroke and chronic pain, we know that after there is an injury, the brain goes to work trying to reorganize itself. And, during this initial period (which seems to take 3 months to 1 year), there seems to be an opportunity for our therapy to positively influence that reorganization. The timeline presented for concussion recovery seems to match this trajectory. So, like many conditions we work with, the sooner we can see these patients, the better!
2.The assertion that PCS might be permanent after three years does not match our understanding of neuroplasticity.
Science supporting the neuroplasticity of the brain (meaning its ability to change) is probably the biggest therapy-related advancement in our generation. So, I was surprised to see that the authors state that PCS may be “permanent” after 3 years. This seems to be out of step with our current understanding of chronic conditions—not to mention, unnecessarily fatalistic.
While, yes, therapy in the earlier stages is probably most effective—and treatment in the chronic phase should look different than in the acute phase—we must remember that even though there might not be observable changes in testing, we shouldn’t abandon hope that these patients can manage their symptoms. I, personally, would want to see a lot more data and research before believing that patients in the chronic phase of PCS are permanently stuck.
3. Education, self-efficacy, symptom management, and occupation seem like they should be the pillars of our therapy.
While there wasn’t one particular treatment that stood out as a silver bullet, we can surmise from our reading that, as occupational therapy practitioners, our care for those with PCS should probably involve:
- Normalizing clients’ situations by educating them about PCS
- Seeking to understand their degree of self-efficacy in various situations, and seeking to boost it when appropriate
- Using our skill sets to focus on symptom management
- Leveraging our uniquely holistic lens to help patients participate in meaningful activities as fully as possible
I’ll be really curious to hear everyone’s thoughts on this research!
Here’s the full APA citation for this article:
Hiploylee C, Dufort PA, Davis HS, Wennberg RA, Tartaglia MC, Mikulis D, Hazrati LN, Tator CH. Longitudinal Study of Postconcussion Syndrome: Not Everyone Recovers. J Neurotrauma. 2017 Apr 15;34(8):1511-1523. doi: 10.1089/neu.2016.4677. Epub 2016 Nov 29. PMID: 27784191; PMCID: PMC5397249.
Earn one hour of continuing education by listening to the podcast on this article!!
In this podcast episode, we dive even deeper into this topic, with concussion expert (and Club member!), Devon Cochrane. You may be eligible for continuing education credit for listening to this podcast. Please read our course page for more details!