Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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six JIA core set of response variables for the evaluation of response to therapy
[ 15 – 19 ] (Table 8.2 ), as well as in juvenile systemic lupus erythematosus (JSLE),
and in juvenile dermatomyositis (JDM) [ 20 – 28 ].
This chapter describes the most recent and widely used PCROs for the manage-
ment of children with JIA.

Parent/Patient Global Assessment

Parent or patient global assessment (PGA) is included in the JIA ACR core outcome
variables for the evaluation of response to therapy [ 16 ] and is therefore considered
a fundamental tool in the assessment of children with this disease. The parent of the
JIA patient, or the child if aged appropriately, makes a global assessment of the
child’s overall well-being on a 10 cm VAS or on a 21-circle VAS (0 = very good,
10 = very poor) [ 29 ]. The 21-numbered circle VAS has at least 3 advantages over the
traditional 10 cm horizontal line format: (1) the assessor can score the VAS without
a ruler, implying a simpler and quicker calculation; (2) it eliminates the need to
reproduce an exact 10 cm line in printing or photocopying questionnaires, averting
the problem of minor distortion frequently seen with these procedures; (3) it is bet-
ter understood by patients [ 30 ].
Of note, several studies show that the concordance between parent/patient and
physician assessments of JIA disease activity is quite poor, closing 40 % [ 7 , 31 , 32 ].
It was observed that in patients meeting current defi nition of inactive disease in JIA,
only 65 % of parents gave a score of zero in the PGA [ 7 ]. Parents’ rating tended to
be higher if their child has shorter disease duration, is taking second-line drug ther-
apy, has increased reported pain, or has functional impairment. Alternatively, physi-
cians consistently rate disease activity more highly than parents in the presence of
any active joints [ 7 , 31 ]. In a different chronic rheumatic condition such as JDM,
Rider et al. found that physician and parent global ratings of disease activity were
not collinear, and that the non-redundancy may be the result of each evaluating dif-
ferent aspects of the disease [ 33 ].

Table 8.2 Measures
contained in the Juvenile
Idiopathic Arthritis (JIA)
American College of
Rheumatology (ACR) core
set for the evaluation of
response to therapy

The JIA ACR core set of response variables

1. Physician global assessment of disease
   activity


2. Parent/patient assessment of overall
   well-being


3. Functional ability (CHAQ)


4. Number of joints with active arthritis


5. Number of joints with limited range of
   motion


6. Index of infl ammation (ESR or CRP)
   CHAQ Childhood Health Assessment
   Questionnaire, ESR erythrocyte sedimenta-
   tion rate, CRP C-reactive protein

8 PROMs for Juvenile Idiopathic Arthritis