4. Healthcare providers and concussion clinics should provide the following information and respond to the following questions/needs of the patient and family:
- About concussion and the trajectory of recovery
- Additional resources and information
- Healthcare provider experience
- Services offered
- Types of referrals available
Education regarding concussion is highly requested by patients and families and evidence has shown it to be valuable in normalizing and reducing the impact of symptoms. Education allows the patient to begin to know and understand concussion from the outset.
Education about concussion should involve the nature of the injury, expected recovery, prognosis, and expected responses to any needed treatment. Patients should expect to receive both verbal and written information and communication about their care as they move through the post-concussion care pathway.
In reality patients and families have not always been able to access clear and comprehensive information and this has led to confusion, uncertainty, anxiety and vulnerability. Due to long waitlists at some specialized concussion centres/clinics, patients have been forced to find services where they can. Because of the preponderance of businesses calling themselves concussion clinics, some patients may not be able to discern whether they are getting appropriate or necessary care from the right providers.
What this standard means:
Information about concussion and the trajectory of care should be provided to patients regardless of where diagnosis and post-concussion care is received. Patient feedback speaks to the need to portion information so as not to inundate or overstimulate patients with too much detail in the initial few days.
Education is best provided in multiple formats (website, pamphlet, over the telephone or in-person), to allow patients to learn in the medium they can tolerate and are comfortable with, with sources to more information available as wanted or needed.
The following elements should be included in information provided to all patients with concussion and their families. Healthcare providers should ensure that patients receive this information even if they suspect they might have received it from another provider.
- What is a concussion?
- Typical pattern and factors that may affect recovery, including risks and red flags.
- Reassurance that the majority of people recover (what is normal?)
- Things the individual should/should not do (return to play, work, or school).
- When to be concerned and what to do?
- Education on resources, including:
- Types of services available in the near community
- Places to get more information that are reliable and evidence-based
- Support groups
Concussion clinics should be able to explain their services, who provides them, and the qualifications and experience of the providers at the clinic. The clinic should also be able to provide information to patients about the way the providers work together, the degree of support that the clinic will provide, whether there is evidence to support the therapies being offered, and what services are covered by OHIP and other payor sources. If patients are being asked to pay for some services out of pocket, they deserve to know that these therapies are necessary and appropriate. If services offered are too expensive the provider(s) should be upfront and endeavour to highlight other options that would be cheaper and also appropriate; most professional standards that guide the practice of healthcare professionals mandate this.
- What experience does the clinic have in concussion?
- How many patients with concussion have you seen?
- Is there a particular population 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?
- 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?
- available at the clinic
- available beyond the clinic
- websites that are reliable (evidence-based information/treatments)
Tools and Resources:
Providing Information to Patients and Families (Patient Education)
Concussion Information Pamphlet/ web content
“Dos and Don’ts” handout
Listing of Resources
Information Clinic/Networks Should Be Able to Provide to Patients