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

Abstract

Purpose

To explore the experiences of adults with persistent postconcussion symptoms and clinicians to inform the development of a concussion-specific questionnaire.

Methods

Using a qualitative descriptive design, we conducted 10 focus groups with persons with persistent post-concussion symptoms (n = 35; female 66%; age range 19.0–65.1 years) and semi-structured interviews with clinicians with concussion expertise (n = 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.

Results

Three overarching themes emerged from the data: Functioning, Environmental and Personal Factors, and Capacity. Functioning mapped closely onto Activities and Participation within the ICF. Contextual factors, both Environmental and Personal, had a significant influence on functioning following concussion. Capacity was a unique finding that described how long a person is able to engage in a task before the onset or worsening of symptoms.

Conclusions

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 Rehabilitation

• Clinicians 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.

Keywords:

• Concussion
• qualitative research
• International Classification of Functioning
• Disability and Health
• capacity

Acknowledgements

The authors thank the persons with PPCS who participated in this study for their strength, honesty, and courage in sharing their experiences. The authors thank all the clinicians who gave their time and expertise with this research. Our appreciation goes out to Lynne Fraser at the Ottawa Hospital Rehabilitation Centre for her assistance with logistical arrangements.

Disclosure statement

The authors report no declarations of interest.