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On average, patients with JIA have a poorer HRQOL as compared with healthy
peers in both physical and psychosocial domains , with physical health being more
affected. In a recent multinational survey, the areas of HRQOL most affected by JIA
(<2 SDs of the mean of healthy children) were global health, physical functioning,
role social limitation (physical), and bodily pain/discomfort [ 41 ]. The results of this
and other studies demonstrate that children with JIA have a greater impairment in
physical well-being than in psychosocial health, and that physical disability and
pain are important determinants of HRQOL [ 12 , 41 , 68 ].
When patients with JIA were divided according to ILAR category, it was found
that those with persistent oligoarthritis had, on average, a better HRQOL than those
with the other subtypes in all domains; the HRQOL of patients with systemic arthritis,
polyarthritis, and extended oligoarthritis was similar in these three subtypes [ 41 ].
The Child Health Questionnaire
The Child Health Questionnaire (CHQ) is a generic health instrument designed to
capture the physical and psychosocial well-being of children 5 years of age and
older [ 66 ]. Parents are instructed to take into consideration the 4-week period pre-
ceding their compilation of the questionnaire. The CHQ measures by means of 50
items (questions) the following health concepts: global health (GGH); physical
functioning (PF); role/social, emotional/behavioral limitations (REB); role/social
physical limitations (RP); bodily pain discomfort (BP); behavior (BE); global
behavior (GBE); mental health (MH); self-esteem (SE); general health perception
(GH); change in health (CH); emotional impact on the parent (PE); impact on the
parent’s personal time (PT); limitations in family activities (FA); and family cohe-
sion (FC). The 50 items are re-coded to ensure that all questions are positively
scored, so that a higher score indicates better health, and recalibrated to ensure that
the responses taken together represent a continuum. The scores for each health con-
cept are then transformed according to the following formula: actual score (sum of
the item responses divided by the number of completed items) minus the lowest
possible score divided by the possible score range; the transformed scores are there-
fore on a scale ranging from 0 to 100, with a higher score indicating better function-
ing and well-being. The score for each health concept can be evaluated only if half
or more of the items within a scale have been answered, or half plus one in the case
of scales with an odd number of items. By means of two subsequent steps, two fi nal
grouping scores are then obtained by the procedures described below, namely the
physical summary score (PhS) and the psychosocial summary score (PsS). As
instructed by the developer of the CHQ, only 10 out of 15 possible health concepts
are currently used to calculate the PhS and PsS summary scores: PF, RP, BP, GH,
REB, PT, PE, SE, MH, BE. The use of the fi ve remaining scales (GGH, GBE, CH,
FA, FC) in calculating the PhS and PsS summary scores is still being evaluated and
tested by the author of the CHQ. The fi rst step is to calculate the standardized z -score
for each of the ten health concepts using the following formula: the transformed
A. Consolaro et al.