Article

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.

Langue : ANGLAIS