Growing up and moving on in rheumatology: parents as proxies of adolescents with juvenile idiopathic arthritis.
OBJECTIVE
To examine agreement about physical health, functional ability, and health-related quality of life (HRQOL) between adolescents with juvenile idiopathic arthritis (JIA) and their parents.


METHODS
The study group comprised 303 adolescent-parent dyads who completed individual questionnaires, including the Childhood Health Assessment Questionnaire with visual analog scales for pain and general well-being, and the Juvenile Arthritis Quality of Life Questionnaire. Agreement was determined using the Bland and Altman method.


RESULTS
Approximately half of the adolescent-parent dyads showed clinically acceptable agreement for pain, general well-being, functional disability, and HRQOL. Where discrepancies occurred, there were similar numbers of parental overestimation and underestimation, with the exception that parents rated functional ability worse than did adolescents. Parents were also consistent with respect to overestimation or underestimation, irrespective of the health domain in question. Agreement was associated with better disease-related outcome variables, but was not significantly influenced by demographic factors. Agreement between adolescents and parents was dependent on the level of disease outcome and the health domain under scrutiny, and was less for moderate disease outcomes (as compared with mild or severe) and less visible phenomena (e.g., pain, global well-being).


CONCLUSIONS
There is a wide variation in agreement between adolescents with JIA and their parents that is dependent on which health-related variable is under scrutiny. Proxy report is likely to be valid for adolescents with JIA at either the mild or severe end of the spectrum and/or for the visible manifestations of the disease. Consideration of both adolescent and parent-proxy reports is therefore important in future research.
Institute of Child Health, University of Birmingham, Diana, Princess of Wales Children's Hospital, Steelhouse Lane, Birmingham B4 6NH, United Kingdom.
K L
KL
Shaw
T R
TR
Southwood
J E
JE
McDonagh
D000293:Adolescent; D001171:Arthritis, Juvenile; D002648:Child; D006233:Persons with Disabilities; D005260:Female; D006801:Humans; D008297:Male; D010147:Pain Measurement; D010290:Parents; D011788:Quality of Life; D011795:Surveys and Questionnaires