Measuring cognitive assessment and intervention burden in patients with acquired brain injured: Development of the ”How Much is Too Much” questionnaire
Jennifer Tomaszczyk, Bhanu Sharma, Albert A. Chan, Brenda Colella, Jenkin Mok, Dorcas Beaton, Bruce Christensen, Robin Green
Research Department, Toronto Rehabilitation Institute, Toronto, Canada
Objective: To design and preliminarily test a questionnaire intended to measure patient treatment burden resulting from participation in cognitive assessments and interventions.
Methods: An expert consensus process was used to develop the concept of patient treatment burden and to determine the first set of questionnaire items and administration protocol. The pilot questionnaire was administered to 20 patients with mild to severe acquired brain injuries on completion of a 2-h or longer neuropsychological assessment. Following preliminary testing, the questionnaire was revised and re-evaluated by a second expert panel and content validity was assessed.
Results: Burden was defined as psychologically and/or physically aversive symptoms in response to cognitive assessment or intervention. The first questionnaire contained 21 items assigned to 3 categories: physical, cognitive, and emotional. Eighty-five percent of patients endorsed symptom level increases, with “tired/fatigued” the most frequently endorsed item (80% of patients). Instructions and test items were easily understood, and the questionnaire was quick to administer. Content validity ratio (CVR) of the revised questionnaire yielded 23 acceptable items and a subset met the highest CVR threshold (>0.78).
Conclusion: This patient-reported outcome will ultimately help patients give voice to aversive experiences, and help clinicians and researchers to monitor and adapt assessments/treatments appropriately. Future steps in development are described.
There are currently no tools for measuring adverse effects (e.g., fatigue, stress) of cognitive testing and interventions in patients with acquired brain injury (ABI). We designed a preliminary questionnaire for patients with ABI for measuring adverse effects of cognitive testing and interventions, and administered it to 20 patients who had completed intensive cognitive assessments. The questionnaire asked patients about negative cognitive, physical and emotional symptoms resulting from the session. Eighty-five percent of patients reported worsening of at least one symptom, with feelings of tiredness/fatigue most common. The questionnaire was then revised, and experts were asked to rate the appropriateness of items. The questionnaire’s development is ongoing. Such a questionnaire is needed to enable patients to voice any aversive experiences of cognitive testing/intervention, and to enable clinicians and researchers to monitor and adapt assessments and treatments appropriately. The tool is particularly relevant for remote (e.g. internet-based) assessment and intervention delivery.
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