Caregiver recall of treatment recommendations in juvenile idiopathic arthritis.
OBJECTIVE
Health care providers in juvenile idiopathic arthritis (JIA) might refer to caregivers' self-report of children's treatment-related behaviors to assist in clinical decisions. However, caregivers may believe that they are adhering to treatment even though they have a different understanding of recommendations than that intended by the medical team. We examined whether caregiver recall of children's JIA treatment matched actual recommendations at baseline and 3, 6, 9, and 12 months.


METHODS
A total of 235 primary caregivers were recruited from rheumatology clinics at 2 pediatric university-based teaching hospitals in Canada. Using the Parent Adherence Report Questionnaire, caregivers indicated whether their child was prescribed medications and/or exercises. Medical charts were reviewed to determine the prescribed treatment. Level of agreement between both sets of data was then examined.


RESULTS
A total of 175 caregivers provided complete data. Mean age of the children was 10.2 years (68.6% girls); 44.6% were diagnosed with oligoarthritis. Kappa coefficients for medication represented substantial to almost perfect agreement beyond chance, with better levels of agreement at 12 months (kappa = 0.81, 95% confidence interval [95% CI] 0.68, 0.94) than at baseline (kappa = 0.61, 95% CI 0.47, 0.76). Kappa coefficients for exercise represented slight to moderate agreement beyond chance, with better agreement at 12 months (kappa = 0.44, 95% CI 0.24, 0.63) than at baseline (kappa = 0.27, 95% CI 0.08, 0.47).


CONCLUSIONS
Weaker agreement for the exercise regimen raises concern that caregivers may pay less attention to exercise recommendations or that these recommendations may not be easily understood.
De Civita
Mirella
M
McGill University Health Centre, Division of Clinical Epidemiology, Montreal, Quebec, Canada. mirella@epimgh.mcgill.ca
Feldman
Debbie Ehrmann
DE
Meshefedjian
Garbis A
GA
Dobkin
Patricia L
PL
Malleson
Pete
P
Duffy
Ciarán M
CM
D000293:Adolescent; D000328:Adult; D001171:Arthritis, Juvenile / Q000628:therapy*; D017028:Caregivers / Q000523:psychology*; D002648:Child; D002675:Child, Preschool; D003142:Communication; D005260:Female; D006801:Humans; D008297:Male; D011939:Mental Recall; D010290:Parents / Q000523:psychology; D010349:Patient Compliance; D011795:Surveys and Questionnaires