A qualitative study of persons with persistent postconcussion symptoms and clinicians with concussion expertise to inform the development of a concussion-specific questionnaire.

Abstract

To explore the experiences of adults with persistent postconcussion symptoms and clinicians to inform the development of a concussion-specific questionnaire. Using a qualitative descriptive design, we conducted 10 focus groups with persons with persistent post-concussion symptoms (<i>n</i> = 35; female 66%; age range 19.0-65.1 years) and semi-structured interviews with clinicians with concussion expertise (<i>n</i> = 16; female 81%). Thematic analysis was used to identify themes within their narratives. The International Classification of Functioning, Disability and Health (ICF) provided a standardized language for coding. Three overarching themes emerged from the data: <i>Functioning</i>, <i>Environmental</i> and <i>Personal Factors</i>, and <i>Capacity</i>. <i>Functioning</i> mapped closely onto Activities and Participation within the ICF. Contextual factors, both <i>Environmental</i> and <i>Personal</i>, had a significant influence on functioning following concussion. <i>Capacity</i> was a unique finding that described how long a person is able to engage in a task before the onset or worsening of symptoms. Capacity is fundamental to measuring limitations in functioning based on symptom threshold and time to recovery. The impact of contextual factors on functioning needs to be considered on a continuum from barrier to facilitator. These findings provide the basis for the development of a concussion-specific questionnaire.Implications for RehabilitationClinicians should explore with their patients limitations across all areas of functioning.Clinicians should explore and address support and relationships, attitudes of others, access to affordable and high-quality healthcare, coping strategies, and a patient's own knowledge of concussion as these influence functioning.Current guidelines recommend a symptom-based approach to concussion management, whereas persons with concussion emphasize the importance of measuring functional capacity.Capacity is defined as the length of time one can perform a task before symptom onset, primarily fatigue.Currently, no concussion-specific measure of functioning exists.