Growing up and moving on in rheumatology: Parents as proxies of adolescents with juvenile idiopathic arthritis
Article first published online: 31 MAR 2006
Copyright © 2006 by the American College of Rheumatology
Arthritis Care & Research
Volume 55, Issue 2, pages 189–198, 15 April 2006
How to Cite
Shaw, K. L., Southwood, T. R. and McDonagh, J. E. (2006), Growing up and moving on in rheumatology: Parents as proxies of adolescents with juvenile idiopathic arthritis. Arthritis & Rheumatism, 55: 189–198. doi: 10.1002/art.21834
- Issue published online: 31 MAR 2006
- Article first published online: 31 MAR 2006
- Manuscript Accepted: 24 AUG 2005
- Manuscript Received: 4 MAY 2005
- Arthritis Research Campaign. Grant Number: SO635
- Juvenile idiopathic arthritis;
- Parent-child agreement;
- Health-related quality of life
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.
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.
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).
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.