210
problems may heavily interfere with the development of independence and self-
esteem, especially in adolescence.
A combined meeting held in 1997 by the World Health Organization (WHO) and
the International League of Associations for Rheumatology (ILAR) [ 5 ] reached a
consensus on the defi nitions of quality of life that is the perception of individuals of
their own position in life in the context of culture and value systems in which they
live and in relation to their goals, expectations, standard and concerns. HRQOL per-
tains to the physical, emotional, and social aspects of quality of life infl uenced by an
individual’s disease and/or its treatment; disability is the limitation in an individual’s
ability to act in a usual, customary, and personally desired way caused by one or
more health conditions affecting physical or mental function.
As a consequence, in recent years, there has been a growing interest in the assess-
ment of parent- and child-reported outcomes (PCROs) in pediatric rheumatic dis-
eases. Incorporation of these measures in the routine clinical evaluation is considered
important as they refl ect the parent’s and child’s perception of the disease course
and effectiveness of therapeutic interventions. Because parents and children (when
mature enough to understand the clinical and therapeutic issues related to their dis-
ease) are asked with increasing frequency to actively participate in shared decision-
making, integration of their perspective in clinical assessment may facilitate
concordance with physician’s choices and improve adherence to treatment [ 6 – 9 ]. In
addition, the use of PCROs may help the physician to identify with greater accuracy
the salient issues for each patient and to focus the attention on the relevant matters.
Thus, information obtained from the parent or the child may contribute to the suc-
cess of patient care. It is now agreed that the inclusion of PCROs in clinical practice
may lead to improve the quality of care [ 10 ].
A number of tools for the assessment of PCROs in children with JIA are avail-
able, including visual analog scales (VAS) for rating of a child’s overall well-being
and intensity of pain, and questionnaires for the evaluation of functional ability and
HRQOL [ 11 – 14 ]. The importance of the concepts of disability and HRQOL is
directly refl ected by the high number of references available in PubMed in the adult
and pediatric rheumatology literature for the evaluation of the short- and long-term
outcomes, in observation studies, and in clinical trials. More recently both concepts
have been instrumental also for clinical trials since they have been included in the
Table 8.1 Frequency and sex distribution of categories of juvenile idiopathic arthritis according
to the International League of Associations for Rheumatology (ILAR)
Frequency (%) Sex ratio
Systemic arthritis 4–17 F = M
Oligoarthritis 27–56 F ≫ M
Rheumatoid-factor-positive polyarthritis 2–7 F ≫ M
Rheumatoid-factor-negative polyarthritis 11–28 F ≫ M
Enthesitis-related arthritis 3–11 M ≫ F
Psoriatic arthritis 2–11 F > M
Undifferentiated arthritis 11–21 –Modifi ed from [ 1 ]
A. Consolaro et al.