When it comes to rating the severity of their illness and assessing its effect on their quality of life, teens with juvenile idiopathic arthritis may not see eye to eye with their parents, reported K.L. Shaw, Ph.D., of the Institute of Child Health, University of Birmingham (England), and associates.
Perceptions between parent and teen are particularly discordant when the disease is of medium severity, but these become more in sync at either end of the disease spectrum, the researchers said (Arthritis Rheum. 2006;55:189–98).
In rheumatology, patients often are asked for their subjective assessment of their function, pain, and health-related quality of life (HRQOL). Adolescents are particularly well suited to self-assessment; their cognitive development is usually up to the task and self-assessment lets teens maintain their autonomy and privacy. Parents of teens who are not able or willing to self-report are asked to report on these subjective aspects of their child's disease, acting as a proxy for the adolescent. The unanswered question has been to what extent the findings from teen self-assessment and parent's assessment of the teen's health overlap, Dr. Shaw and associates said.
They examined agreement about pain, physical health, functional ability, and HRQOL between adolescents with juvenile idiopathic arthritis (JIA) and their parents using 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.
The study population consisted of 303 adolescent-parent dyads. The children were divided into groups aged 11, 14, and 17 years, to reflect the various stages of adolescent development, Dr. Shaw and associates wrote.
They found a wide variation in agreement for the variables studied. For pain, agreement between adolescents and parents was better when the mean rating for pain was either low or high, and most discordant when the mean pain rating was at the middle of the scale.
Also, adolescents who showed agreement with their parents had statistically significant lower disease activity, fewer active or limited joints, lower pain, better general well-being, lower disability, and better HRQOL, when compared with the other groups. The findings were similar for general well-being, functional disability, and HRQOL.
Parents were as likely to underestimate pain and general well-being as they were to overestimate them, compared with their child's self-reports, leading the investigators to speculate that this tendency may have “more to do with psychological factors than clinical or demographic variables.”
There was also a greater proportion of disagreement in the 14-year-old age group with JIA that was not oligoarticular. This “may reflect the increasing desire for independence from parents that is characteristic of mid-adolescence and is potentially more challenging in the context of more extensive disease,” Dr. Shaw and associates wrote.
“When examined with respect to clinical definitions of agreement, only half of the parents assessed in this study would be considered acceptable proxies for their adolescent children,” according to Dr. Shaw and associates.