© Springer International Publishing Switzerland 2016 209
Y. El Miedany (ed.), Patient Reported Outcome Measures in Rheumatic Diseases,
DOI 10.1007/978-3-319-32851-5_8
Chapter 8
PROMs for Juvenile Idiopathic Arthritis
Alessandro Consolaro , Stefano Lanni , Angelo Ravelli , and Nicolino Ruperto
Introduction
Juvenile idiopathic arthritis (JIA) is the most common chronic rheumatic disease in
children, with an incidence in Europe of about 16 to 150 per 100,000 per year, and
is an important cause of short-term and long-term disability [ 1 ]. The International
League of Associations for Rheumatology has defi ned JIA as arthritis with no
apparent cause lasting more than 6 weeks with disease onset prior to age 16 [ 2 ].
Seven different subtypes of JIA are recognized, differing in genetic susceptibility,
distribution, and severity of arthritis (Table 8.1 ). The prognosis of JIA is widely
variable, depending on the subtype of the disease. In general, at least 50 % of chil-
dren experience some form of the disease into adulthood and about one-third of
patients diagnosed with JIA develops persisting functional and psychological dis-
ability, with many having limitations in daily activities impacting on health-related
quality of life (HRQOL) [ 3 , 4 ]. Although the recent advances and the newer thera-
peutic options, namely the biologic agents, have greatly improved the long-term
outcome of this group of diseases, few chronic conditions may challenge the child
and his family as much as severe JIA, a disease that, by its very nature, has a major
impact on the everyday quality of life. The child has to face problems related to joint
stiffness, pain, limitation of motion, alterations of his/her body image secondary to
joint deformities, and growth problems that can lead to the impossibility of
performing everyday activities in the same way as his peers. Moreover, these
A. Consolaro , M.D., Ph.D. • A. Ravelli , M.D.
Università degli studi di Genova , Genoa , Italy
Pediatria 2, Reumatologia , Istituto Giannina Gaslini , Genoa , Italy
e-mail: [email protected]; [email protected]
S. Lanni , M.D. • N. Ruperto , M.D., M.P.H. (*)
Pediatria 2, Reumatologia , Istituto Giannina Gaslini , Genoa , Italy
e-mail: [email protected]; [email protected]