TY - JOUR
T1 - Measuring cognitive assessment and intervention burden in patients with acquired brain injury
T2 - Development of the "how Much Is Too Much?" questionnaire
AU - Tomaszczyk, Jennifer C.
AU - Sharma, Bhanu
AU - Chan, Albert A.
AU - Colella, Brenda
AU - Mok, Jenkin N.Y.
AU - Beaton, Dorcas
AU - Christensen, Bruce K.
AU - Green, Robin E.A.
N1 - Publisher Copyright:
© 2018 Foundation of Rehabilitation Information.
PY - 2018
Y1 - 2018
N2 - 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. Eightyfive 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.
AB - 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. Eightyfive 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.
KW - Acquired brain injury
KW - Cognitive assessment
KW - Neuropsychology
KW - Neurorehabilitation
KW - Patient burden
KW - Patient-reported outcome
KW - Questionnaire
UR - http://www.scopus.com/inward/record.url?scp=85049412347&partnerID=8YFLogxK
U2 - 10.2340/16501977-2344
DO - 10.2340/16501977-2344
M3 - Article
SN - 1650-1977
VL - 50
SP - 519
EP - 526
JO - Journal of Rehabilitation Medicine
JF - Journal of Rehabilitation Medicine
IS - 6
ER -