How to use clinical guidelines to get proper treatment and care
Know the standard of care and ask for it
I’ve written before about how and why the medical system routinely fails people recovering from brain injuries. Now I want to talk about one way you can empower yourself to ask for the care you need. Specifically, physical therapy.
Before I begin, I want to acknowledge the great work that physical therapists do for their patients every day. The issues I’m about to describe have more to do with the institutions they work for—the protocols and procedures that define your care are often set at the institutional level.
With that said, let’s take a brief look at a situation you may be all too familiar with, before we look at how to use clinical guidelines to remedy that situation.
When doctors insist on providing evidence based care that isn’t evidence based
Does this scenario sound familiar? Weeks after a concussion, you see your primary care physician, who refers you to a specialist in sports medicine. After waiting months for that appointment, you arrive expecting to finally receive some appropriate care. Instead, this specialist merely punts you off to the physical or occupational therapy department.
When you ask if any other care will be provided, the sports medicine doctor explains that they can only provide evidence based care at this institution. He goes on to claim that physical and occupational therapies are the only treatments for which there is any evidence.
While you rightly suspect that you’re not being told the whole truth about the existence of other evidence based treatment options, you figure that at least the physical and occupational therapy you’re about to receive is evidence based.
Is it, though?
A very brief history of physical therapy related to concussions
The field of physical therapy arose in the aftermath of first World War. Returning veterans needed rehabilitative care for a wide variety of injuries, some of which were new because the weapons of war were new.
From the very beginning, PT involved doing things that worked for patients in the absence of evidence. Over the next several generations, the field of PT grew, as did the evidence for the effectiveness of what they were doing.
About a century later, veterans returning from the war in Iraq challenged the field of physical therapy once again. Many of these soldiers had survived blast injuries and had lingering post-concussion syndrome.
Once again, PTs had to figure out what worked in the absence of evidence until the evidence caught up. Believe it or not, that evidence is only now beginning to roll out across the US.
As a general rule, it can take 8 to 10 years or more for clinical protocols and practices to be proven and deemed “evidence based.” Thus, the care you receive today was likely validated more than a decade ago. And yes, there are new protocols and treatments being developed in the present that won’t be widely adopted until 10 or more years from now.
This helps explain why there can be such varying opinions from one healthcare practitioner to another.
Say hello to the new evidence based clinical practice guidelines
Coming in at 73 pages (the last 18 of which is an appendix of references to the evidence), the “Physical Therapy Evaluation and Treatment After Concussion/Mild Traumatic Brain Injury” clinical practice guidelines were published in September, 2020.
These are the “Clinical Practice Guidelines Linked to the International Classification of Functioning, Disability and Health From the Academy of Orthopaedic Physical Therapy, American Academy of Sports Physical Therapy, Academy of Neurologic Physical Therapy, and Academy of Pediatric Physical Therapy of the American Physical Therapy Association.”
These guidelines were written by the best of the best. They include a good measure of what PTs learned from treating Iraq war veterans and others. They allow you to speak with some authority when you politely insist that your care meet these standards.
While the term “evidence based” is too often used as cudgel to deny people care, the people wielding that cudgel never expect to see a patient pick it up and use it to demand proper evidence based care. You can do that now.
With these guidelines in hand, any denial of truly evidence based care becomes indefensible.
Using the guidelines to ask for care
The guidelines, which you can view or download here, are divided into three sections: Screening and Diagnosis, Examination, and Interventions.
As you scan these sections, you may notice areas where you did not receive the proper standard of care. For example:
Examination procedures should include examination for impairments in the domains of cervical musculoskeletal function, vestibulo-oculomotor function, autonomic dysfunction/exertional tolerance.
Were you screened for these things? If not, kindly point to the guidelines and ask for these screenings and examinations.
Take special note of this passage, from the Interventions section:
Physical therapists should refer patients who have experienced a concussive event for further consultation and follow-up with other health care providers as indicated. Of specific note, high-quality clinical practice guidelines recommend referral for specialty evaluation and treatment in cases of persistent migraine-type and other chronic headaches, vision impairments (including ocular alignment), auditory impairments, sleep disturbances, mental health symptoms, cognitive problems, or any other potential medical diagnosis that may present with concussion-like symptoms or coincide with concussion symptoms (eg, lesions/tumors or endocrine abnormalities such as post-traumatic diabetes insipidus).
This guideline alone should lead to treatments such as: vision therapy, vestibular therapy, light therapy, retraining of the auditory system (perhaps with something like the Safe & Sound protocol), and more.
Did you receive such referrals or care? If not, use the guidelines and kindly ask for them.
Note: There is another implication in the guideline above. The physical therapist has effectively become a case manager. This responsibility falls to them due in part to the failure of the medical system to manage the care of people recovering from concussions.
Remember: a concussion is not a diagnosis
To borrow an insight from Dr. Julia Treleaven, a concussion is not a diagnosis, it is a mechanism of injury. The injury involves damage and disruption across a wide range of systems.
Physical and occupational therapists are on the front lines providing treatments that should (if these guidelines are followed) involve multiple systems of your brain and body.
They’re the ones most likely to know, for example, that your dizziness could be cervicogenic, oculomotor, peripheral (coming from your inner ear), central (coming from your brain), or some combination. Both the screening and the treatment of these complex issues requires deep experience.
These guidelines can give you a sense of the spectrum of care you should be receiving, as well as the quality. You’ll have to determine (with the help of these guidelines) whether your care is adequate.
Finally, it must also be said that, while physical and occupational therapy are essential, they certainly aren’t the only evidence based treatments that can help someone after a concussion or mild traumatic brain injury. I’ve written about several treatment options so far. More is on the way.
Another viable option: standalone physical therapy clinics
While large organizations like Kaiser, your local university hospital, and other institutions have in-house physical therapy clinics, you can also work directly with a standalone clinic that just does physical therapy. You often don’t need a referral, you can just walk in, and they will deal with billing your insurance, typically with some form of co-pay for each treatment.
It’s a mistake to think that these therapists aren’t as good as those you’ll find at a large institution. Sure, there’s variation from one clinic to another and from one person to another, but that’s true of any profession. It’s also true that some of these therapists are truly fantastic.
There’s another upside to working with these clinics: a far lower level of bureaucracy and a far greater level of scheduling flexibility.
As of September 2020, physical therapists established clinical guidelines for the evaluation and treatment of people suffering from a mild traumatic brain injury. It may be some years before they become the standard of care. Meanwhile, you can use them as a guideline for your own care.
Too often, doctors may deny care by insisting that everything be evidence based; Turn this to your advantage by using the clinical guidelines to insist on receiving truly evidence based care.
Then too, you can use these guidelines to seek out specialists who provide the care described in the document, such as vestibular rehabilitation specialists, vision therapists, auditory rehabilitation specialists, and more.
If you can’t find such therapists within the organization that serves you, or if the bureaucracy proves unbearable, you could always try working directly with a clinic in your area that exclusively provides the forms of physical therapy you want and need. Here again, you can discuss the guidelines with them.
Brainwave is an informational resource for people whose symptoms haven’t resolved after a concussion or mTBI. I endeavor to present this information in a clear and concise way, spelling out what’s backed by science and what remains unknown. Nothing here is meant as a substitute for professional medical advice, diagnosis, or treatment. I am not a physician or a healthcare practitioner of any kind; I’ve simply had a lot of sports-related concussions and had to learn this stuff the hard way. If you found this information helpful or know someone who might benefit from it, please share and subscribe to Brainwave.