Persisting Symptoms after Concussion (PSaC)

Why is Post-Concussion Syndrome Important (& the term problematic)?

The first action of the post-concussion syndrome working group was to consider an update to the terminology. The working group discussed how the PCS terminology may create a barrier to effective recovery - by conveying a sense of hopelessness and blaming the patient for not getting better. "Post-concussion syndrome" implies a constellation of symptoms that consistently occur together after an individual has sustained a concussion - which is not the case.

As neurobiological, psychological and social factors that drive symptom persistence are becoming better understood, the working group identified a need for a clinical term that emphasizes the importance of accurate diagnosis of specific symptoms that persist after the expected recovery period.

PCS as "Clinical Red Herring"

Misattribution of symptoms, diagnostic errors and misinformation by health care providers may lead to post-concussion syndrome (PCS) as a "clinical red herring." Symptoms that are misattributed to concussion results in inadequate evaluation and treatment - leaving treatable symptoms and conditions to go untreated. Many of these patients will also receive an "over-prescription" of cognitive and physical rest. Patients with persisting symptoms often have high levels of disability, reduced life satisfaction, and increased healthcare utilization.

Symptoms that are consistent with post-concussion syndromes are also consistent with normal life, depression/anxiety/other mental health disorders, chronic pain and symptoms reported by persons involved in personal injury litigation.

Persisting Symptoms after Concussion (PSaC)

The International Congress for Athlete Brain Health accepted the recommendation to update the term "post-concussion syndrome" to "persisting symptoms after concussion" - which places a focus on treatable symptoms.

Persisting is an active state vs. persistent may mean forever - this is an important distinction for the updated terminology. Persisting Symptoms after Concussion (PSaC) implies specific symptoms are persisting that require ongoing clinical management and emphasizes the importance of accurate diagnosis of specific symptoms that can persist after the expected recovery period.

PSaC calls for individualized evaluation and treatment, while communicating that symptoms experienced after concussion may not be due to concussion and uses active and optimistic language that implies symptoms are not permanent and thus treatable.

Persisting symptoms after concussion are characterized by the following:

Symptoms:
- not improving or are worsening in number and/or severity over days to weeks after injury
- persisting beyond the period that can be explained by pre-morbid, co-morbid or resulting factors
- may be related to issues directly resulting from the injury, but not the injury itself
- cause distress or disability more days than not
- interfere with partial or full return to typical activities such as school, work, sport, and/or social roles

Working Group

Working Group

Chair: Donna Broshek , PhD, ABPP

Members:

Russell Bauer, PhD, ABPP
RJ Elbin, PhD
Stan Herring, MD
Anne Mucha, DPT
Jamie Pardini, PhD
Jacob Resch, PhD, AT
Julianne Schmidt, PhD, ATC
Bert Vargas, MD, FAHS, FAAN

Patient Representative:

Justin Murphy

Our Work

The Persisting Symptoms after Concussion (PSaC) working group aims to further the understanding that persisting symptoms after concussion are treatable and to counter the misconception that concussion symptoms are inevitably permanent.

Our tasks include:

Abolish the term PCS (post-concussion syndrome) and promote new definition of PSaC.

Explore the role of mood changes as a response to injury and loss.

Conceptualize PSaC by learning from other chronic conditions

Integrate knowledge to inform new approach to treatment.

Gaps Identified

Diagnosis of PCS is often made too soon, inappropriately, or perhaps pejoratively and creates a sense of hopelessness for some providers and/or patients.

PSaC has been characterized in many ways that may not be supported by empirical research.

Athletes may be unable to find providers with adequate experience and who practice evidence-based treatment.

There is little research examining the impact and overlap of concussion and whiplash/cervicogenic factors.

Research Needed

Need empirically validated outcome measures to evaluate and track recovery from SRC.

Need to define common data elements (from multiple disciplines) that allow valid and reliable measurement of factors that drive symptom persistence.

Need to demonstrate that interventions utilized to treat PSaC have quality evidence-based data re: effectiveness.

“Let the data speak” use empirical studies, including “big data” projects to inform our understanding of PSaC, value/methods of phenotyping, etc.

Recommendations: Athlete/Patients & Caregivers

Increase knowledge of importance of multidisciplinary, evidence-based care following sports-related concussion.

Do not settle for a diagnosis of “Post-Concussion Syndrome.”

Request referral to a specialist with expertise in sports concussion and/or a multi-disciplinary concussion clinic.

Not all health care providers offer evidence based treatment.

If your symptoms are not improving, you may need a second opinion.

Expect that effective treatment of PSaC will take time and will require you to be an active, collaborative participant in your treatment.

Practice healthy coping skills (especially related to injury).

Practice healthy habits that may reduce risk of SRC.

Not all recoveries are the same...

“Sport-related concussion is a heterogeneous injury that is characterized by a myriad of symptoms, variable clinical presentations, and recovery trajectories.”

Collins, Kontos, Reynolds, Murawski, Fu (2014)

“The personal experience & reporting of post-concussion syndrome is likely individualized, representing the cumulative effect of multiple variables, such as genetics, mental health history, current life stress, medical problems, chronic pain, depression, personality factors, & other psychosocial & environmental factors.”

Wäljas, Iverson, Lange, et al. (2015)