Agreement between proxy and adolescent assessment of disability, pain, and well-being in juvenile idiopathic arthritis.
OBJECTIVE
Adolescents with juvenile idiopathic arthritis have demonstrated substantial disagreement with their proxy's assessment of their disability, pain, and well-being. Our objective was to describe the clinical and psychological factors associated with discordance.


METHODS
This analysis included 204 proxy-adolescent (median age, 13 years) dyads that completed a Childhood Health Assessment Questionnaire for disability with 100-mm visual analogue scales for pain and well-being. Depressive symptoms in adolescents were measured by the Mood and Feelings Questionnaire and in proxies the General Health Questionnaire. Disagreement was assessed using Bland-Altman plots. Associations with discordance were identified using logistic regression analyses.


RESULTS
There was higher agreement for disability (84%) than for pain (71%) and well-being (66%). Regression analyses found no association between age, sex, or disease duration and disagreement. However, relationships between disease activity and disagreement in outcomes were identified. Independent associations were found between increasing Mood and Feelings Questionnaire scores and disagreement in pain and well-being.


CONCLUSIONS
Proxy and adolescent reports of pain and well-being are more likely to disagree in those with severe disease. Adolescents who report depressive symptoms are also more likely to disagree with their proxy. The reasons for these are multifactorial, and considerations of both reports are important when assessing outcomes in juvenile idiopathic arthritis.
Lal
Sham D
SD
Arthritis Research UK Epidemiology Unit, University of Manchester, Manchester Academic Health Sciences Centre, Manchester, United Kingdom.
McDonagh
Janet
J
Baildam
Eileen
E
Wedderburn
Lucy R
LR
Gardner-Medwin
Janet
J
Foster
Helen E
HE
Chieng
Alice
A
Davidson
Joyce
J
Adib
Navid
N
Thomson
Wendy
W
Hyrich
Kimme L
KL
D000293:Adolescent; D018771:Arthralgia / Q000503:physiopathology; D001171:Arthritis, Juvenile / Q000175:diagnosis* / Q000523:psychology; D015331:Cohort Studies; D004185:Disability Evaluation; D005260:Female; D006801:Humans; D016015:Logistic Models; D008297:Male; D010147:Pain Measurement; D010549:Personal Satisfaction; D019727:Proxy; D011788:Quality of Life; D012044:Regression Analysis; D012647:Self-Assessment; D012680:Sensitivity and Specificity; D012720:Severity of Illness Index; D011795:Surveys and Questionnaires; D006113:United Kingdom