The difference of disease perception by juvenile idiopathic arthritis patients and their parents: analysis of the JAMAR questionnaire

We found substantial agreement between children’s and parents medians scores in all
evaluated items, as already described 4]. However, individual dyads duo agreement was low, with a large amount of pairs (80)
discordant for at least one item. Discordance in such areas as functional ability,
pain and overall well-being suggests that parents and children may have a different
perception of the disease.

Our results show an increased number of items with disagreement between parents and
children when the disease is more active. In this case, child’s symptoms and disease
perception are more likely to be under/overestimated by parents 5], 8], without a clear direction in the difference as showed by our findings. In a previous
report on JIA focusing on proxy and adolescents’ agreement, Lal et al. showed that
their evaluations of pain and well-being were more likely to disagree in those with
severe disease. They also observed that higher levels of agreement were most representative
of a high level of well being. They did not find an explanation for this phenomenon
5].

Conversely, in an earlier report focusing on agreement for pain, general well-being,
functional disability, and HRQOL in JIA patients, Shaw et al. found maximum discordance
in those with only moderate disease activity 7]. April et al. explained their finding of higher levels of agreement on pain for JIA
patients with more severe disease, arguing that children with more severe disease
tended to have more pain and might have expressed this to their parents 11].

Also, parents might give more attention to those who have a more severe disease.

Our results show that a longer disease and the age of the patient do not affect the
discordance between children and their parents, as also stated by Shaw et al. 7].

The divergence between proxy and children’s reports does not imply that only the child’s
perception reflects reality. Opposing views may reflect their differing perspectives
and are equally valid 12]. Parents may vary in their perception of child health concerns, and therefore health
professionals should consider both children’s and parents’ perspectives. The physician
has to consider this different perception and understand how it will impact on JIA
management and outcome. The integration of these elements in patients care, could
improve reliability of patients-parents reports on disease activity, the adherence
to treatment and at the end disease management.

This study, looking not only on the global sample but comparing patient/parent dyads
duo, extends the perspective of JAMAR questionnaire’s use in the clinical setting
as compared to a previous publication 4].

Our study has some limitations. We used a convenience sample that had a relatively
low level of disease activity, which is representative of our current clinical practice.
Children and their parents were not physically separated when completing the questionnaires,
which may have biased some responses.

Our study is cross-sectional and causality cannot be established. Longitudinal follow-up
studies would allow a better understanding of the effective disease’s impact on health
and quality of life and the impact of discordance on disease’s outcome.