4. Information for Patients and Families (Patient Education)

The Importance of Providing Education

Education regarding concussive injuries is highly requested by patients and families and is one of the most well-established functions supported by the current base of evidence.

In the context of clinical care from healthcare professionals, provision of education for patients and their families regarding concussion must be part triage, diagnosis, and treatment. Education should involve the nature of the injury, expected recovery, prognosis, and expected responses to treatment. Patients should expect to receive both verbal and written information and communication about their care as they move through the concussion care pathway.

There are key points when patients should be given information:

  1. time of diagnosis: verbal/written information on what is a concussion, warning signs, typical recovery across all areas (physical, emotional, return to activity, psychosocial), and who they can call for further information/support
  2. at follow-up: additional information on how to manage any ongoing symptoms, when to initiate further treatment, warnings signs and who to call for further support/information
  3. during treatment: specific symptoms and how to manage them, progress on treatment, key milestones of treatment, process for determining degree of progress

Patients have indicated that they find the wealth of information that exists overwhelming and would appreciate some clear concise information that can get them started in their understanding of concussion. Information should be easily to follow (physically, cognitively and visually), clearly explained, and if web-based, should not require many “clicks” through websites to avoid provoking symptoms. Patients have expressed a need to access information in multiple formats, such as video, auditory, and visual (print and electronic).

The information provided here is to address patients’ needs by presenting the most important information that patients should receive, with a link to a curated list of key resources if they wish to review further information. It is hoped that what follows could be used as a standard educational tool used in concert with other resources that exist (such as local supports). This information will be provided on concussionsontario.org and will also be available via video and paper handouts. References are contained within hyperlinks to minimize visual noise that may aggravate post-concussive symptoms.

About concussion

What is a concussion?

Concussion is a brain injury that can be caused by a sudden acceleration of the head and/or neck resulting from a blow to the head or contact to the body. You do not need to lose consciousness to have sustained a concussion. Concussions can occur from many different activities including falls, motor vehicle collisions, sports, assault or being struck by an object. Symptoms can appear immediately or in some cases, hours to days following the initial injury.

When to be concerned and what to do:

“In rare cases, a dangerous blood clot may form on the brain in a person with a concussion and crowd the brain against the skull. Contact your health care professional or emergency department right away if you have any of the following danger signs after a bump, blow, or jolt to the head or body:” – Center for Disease Control (CDC)

Danger signs in adults:

  • A constant severe headache that gets worse
  • Sudden severe vomiting or nausea
  • Fainting or blacking out or if people can’t wake you up
  • Very drowsy
  • Seizures or convulsions
  • Cannot recognize people or places
  • Increasing confusion, restlessness, or agitation
  • Weakness, numbness or decreased coordination
  • Slurred speech, trouble talking, or not making sense
  • Fluid or bleeding from the ear or nose
  • Unusual or strange behaviour
  • Have one pupil larger than the other (brainline.org)

Danger signs in children:

  • Any of the adult danger signs
  • Will not stop crying and cannot be consoled
  • Will not nurse or eat

The above information was abstracted from:

Typical pattern of recovery and factors that may affect recovery:

After a concussion, some people experience one symptom and others experience many. These symptoms may start right away, or a few days after the injury, and can last for days, weeks, or longer. There are different types of symptoms that you can experience: Problems with thinking, headaches and other physical problems, and changes in emotions and sleep patterns. Most people who experience a concussion make a full recovery, and the symptoms only last 1 to 4 weeks.

Here are some examples of the symptoms a person might experience after a concussion:

  • Thinking: fogginess and difficulty thinking clearly, feeling slowed down, difficulty remembering and concentrating, difficulty finding words
  • Physical: headaches, nausea, dizziness, sensitive to light and noise, blurred or double vision, balance problems, ringing in ears, low energy
  • Emotional/Mood: irritable, nervous/anxious, frustration, anger sadness
  • Sleep: sleeping more or less than usual, difficulty falling and staying asleep

Recovery may take longer for individuals who:

  • are older adults, and teens
  • are female
  • return to work, school, or exercise too quickly
  • have had a concussion in the past
  • have a history of migraine, depression or anxiety
  • have a history of sleep difficulties
  • are showing signs of vestibular and/or visual abnormalities (e.g., blurred vision, dizziness, difficulty focusing, motion sensitivity)

What if I’m not getting better?

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In the first weeks

It is difficult for patients who have had a concussion to know when they will feel better and the answer is not simple. For most people, symptoms improve in the first weeks. Some people panic if they are not better in a few days, and this is not helpful for them. You need to give your brain a chance to recover.

In the first months

For others, it may take longer for symptoms to improve. Research has shown over the past fifteen years that the majority of people recover by three months, and this is when persistent symptoms have traditionally been formally identified in the remaining smaller percentage of people who take longer to recover.

More recently with growing research and clinical knowledge, we can address concussion symptoms earlier and find ways to reduce the impact of persistent symptoms. Recent research has shown that about 30% of children and youth can still be symptomatic at one month32.

When to see a specialist

Not everyone needs to see a specialist or be seen by an interdisciplinary concussion clinic. It’s a matter of giving your brain a chance and the time to heal, but not waiting too long to get the appropriate care if you are not starting to improve. That’s why we have developed the concussion pathway. It’s important that you begin with your primary care provider as the lead on your concussion management. This can be a family physician, pediatrician, sports medicine physician or nurse practitioner.

If symptoms are not starting to improve, your primary care provider can start to work with other providers who may have specific expertise in treating problem symptoms.  At this point, you may be referred to a concussion clinic or if you are in a more remote area, a network of providers who need to work together with your primary care provider to manage your symptoms.

It is important to get the right care, from the right provider at the right time.

It is an unfortunate fact that some concussion clinics have long wait lists. Work is being done at a number of level to improve these wait times.  We would also caution you not to jump at the first available health provider either.  Just because someone can see you right away does not mean they are the right provider for you.  It is important if you are not getting better, that you are seen by a group of healthcare professionals who all have different expertise and scope of practice to help you with your symptoms.

We have prepared information for patients to ask their clinic or group of providers, so they can judge whether they are getting the right care from the right provider.

Please try to be patient and look after your whole self

Please try to be patient and look after your whole self. It’s a complicated balance if your symptoms are persistent (longer than a month), but with the right group of providers they should be able to help you. We hope that this information is helpful to you.

If, after a few months you are not improving, consider seeking care from another provider with additional experience in the particular area of concern (e.g., sleep difficulties, persisting headaches, ongoing difficulties returning to activities).

Supports available at a clinic

Concussion Clinics should have at least 3 different types of regulated providers (disciplines) performing 5 key functions:

  1. Diagnosis/medical clearance decisions:
    • Medical doctor (Physician, Neurologist or Physiatrist)
    • Nurse practitioner
    • Neuropsychologist (diagnosis)
  1. Physical treatment:
    • Physiotherapist
    • Vestibular therapist
    • Chiropractor
    • Sleep medicine physician
  1. Functional, cognitive and emotional support:
    • Occupational therapist
    • Social worker
    • Neuropsychologist/psychologist
    • Speech-language pathologist
  1. Coordination can be provided by any or all providers in the clinic, functions include:
    • Managing clinic appointments and external referrals
    • Liaison with school, work, play settings
    • Ensuring communication back to the primary care provider
  1. Education can be provided by any or all providers in the clinic:
    • This is the foundational work of the clinic

Clinics often have:

  • Medical Doctor
    • Sport medicine physician
    • Physiatrist
    • Access to a psychiatrist
  • Physiotherapist
  • Occupational Therapist
  • Social worker
  • Speech-language pathologist
  • Neuropsychologists

Clinics may have:

  • Nurse practitioner
  • Clinical Psychologist
  • Neurologist
  • Chiropractor
  • Optometrist
  • Nutritionist
  • Therapeutic recreationist
  • Nurse
  • Vestibular therapist
  • Neurosurgeon

Information that Patients should ask Clinics or Networks of providers

Questions have been prepared to guide patients or prospective patients on what to ask post-concussion care providers. Also provided for patients are guiding points for evaluating their health care professional’s answers to the questions.

Note that just because a clinic calls itself a post-concussion clinic does not mean that it meets the standards. It is up to patients and families to ask questions about the care and the care providers available in any clinic to ensure that they are getting qualified care.

You should ask your health care professional the following questions to determine if the treatment environment is right for you.

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Experience
  • What experience does the clinic have in concussion and traumatic brain injury?
  • How many patients with concussion are seen at your clinic?
  • Is there a particular population of patients with concussions that your clinic focuses on? (age or cause of injury)
  • What is the clinic’s experience working with the school system? If needed do you speak with the school and get involved in the return to school plan?
Services offered
  • Will a medical professional be involved in my care?
  • Who makes the decisions about my treatment?
  • What professionals are involved in your clinic?
  • Do the professionals here work as a team to support my care? (Do you work as part of a team?)
  • What is the expected wait time?
  • What services and treatments are offered at your clinic?
  • What services, treatments at your clinic are covered by OHIP? By Group Benefits? By other insurance? By myself?
  • If I am not able to pay for all the services you offer, what are my other options?
  • Which healthcare professional will clear me to return to work/school/sports?
  • If I require services or treatments outside of your clinic, will you continue to see me?
If you have been seen at the clinic for a considerable amount of time, you might want to ask these questions.
  • If I have problems from my concussion that are outside of what your clinic offers, do you know who to refer me to?
  • Will your clinic continue to see me if I am referred to someone else?
  • What happens while I am waiting for the referral appointment?
Notes on types of answers to look for

A healthcare provider should be able to easily and clearly provide the needed answers to each of the questions above.

Some points to keep in mind when evaluating the answers that are provided:

  1. It is important that as a patient you have access, either directly or indirectly, to providers who are trained and experienced in treating patients with concussion. There should be at least one provider who:
    • has training and extensive experience working in concussion
    • can closely supervise and provide regular guidance to those providers who do not have extensive experience.
  2. There is no one individual or discipline that can call themselves a “concussion expert.” There are usually several different providers needed to address persistent symptoms of concussion. Persons can refer to themselves as concussion experts but should adhere to the specific criteria that exist for the use of this term. Quality, evidenced-based concussion care is best described as:
    • closely involving a physician
    • interdisciplinary (more than one profession) model of care that addresses: cognition, physical and emotional function
  3. A medical professional should be involved in your care. This may be:
    • your own family physician (GP) or nurse practitioner who is consulted by other healthcare professionals involved in your care, or
    • a separate physician or nurse practitioner who is directly involved in the Concussion Clinic.
  4. There should be collaboration and consultation among all the healthcare providers involved in your care. For you to receive the most efficient and effective treatment possible, it is important that healthcare providers:
    • create a web of linked services,
    • maintain discussion on your challenges,
    • collaborate on treatment pacing and share progress information
    • provide consultation to the physician or nurse practitioner who will provide clearance for you to return to work, school and play.
  5. A clinic should work with you to help you get the healthcare that you can afford and that is appropriate for you. It is the responsibility of the providers to indicate both the costs of the services not covered by OHIP and ways of obtaining more affordable services; most professional standards that guide the practice of healthcare professionals mandate this.

Supports available beyond the clinic or network of providers:

Brain injury associations/organizations

Education