Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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limitations of CHAQ, namely the ceiling effect and poor sensitivity for children
with relatively good function. The new versions of CHAQ were found to suffer less
from a ceiling effect and to be more normally distributed. Furthermore, they proved
more sensitive at differentiating JIA patients from controls.


Juvenile Arthritis Functionality Scale

In 2007, Filocamo and coworkers developed a shorter and simpler questionnaire for
the assessment of physical function in standard clinical care of children with JIA:
the Juvenile Arthritis Functionality Scale (JAFS) [ 50 ]. The JAFS is a 15-item ques-
tionnaire in which functional activities are grouped in 3 functional areas, each com-
posed of 5 items: (1) lower limbs, (2) hand-wrist, and (3) upper segment. The ability
of the child to perform each task is scored as follows: 0 = without any diffi culty,
1 = with diffi culty, and 2 = unable to do. Questionnaire completers are asked to note
only those diffi culties that are caused by arthritis. An “unable to perform” column
is included to designate the functions that cannot be performed because of develop-
mental immaturity. The total score ranges from 0 to 30. A separate score for each
area (range 0–10) can be calculated. Recently, a modifi ed version of the JAFS has
been devised, in which each item is scored on a 0–3 scale (0 = without any diffi culty,
1 = with some diffi culty, 2 = with much diffi culty, and 3 = unable to do). The total
score of the modifi ed JAFS ranges from 0 to 45. The JAFS is proposed for use as
both proxy report and patient self-report, with the suggested age range of 8–18 years
for use as self-report. It has been argued that owing to the wide variability in the
number and distribution of affected joints in children with JIA, functional question-
naires may contain some items that are irrelevant and uninformative for a particular
patient [ 51 ]. Assessment of functional tasks that are unlikely to be affected in an
individual child (e.g., “lift up a glass to mouth” in a child with arthritis only in the
lower extremity joints or “walk on fl at ground” in a child with arthritis only in the
wrist and hand joints) may “dilute” the global score, leading to a potential underes-
timation of functional impairment. Thus, it would be desirable to ask only specifi c
questions that are relevant for the patient’s distribution of joint disease and to drop
other questions. In this respect, the JAFS may be advantageous over the other physi-
cal function questionnaires as it explores functional activities grouped by the topog-
raphy of involved joints or joint groups. Such structure enables a precise evaluation
of the infl uence of impairment in individual joints on specifi c functions. Preliminary
evidence was found that the JAFS captures with greater accuracy the functional
impact of arthritis in specifi c body areas than does a standard questionnaire (the
C-HAQ) in children with JIA [ 51 ]. The JAFS is currently being translated into sev-
eral languages in the context of a multinational study set to evaluate the epidemiol-
ogy treatment, and outcome of JIA worldwide [ 52 ].


A. Consolaro et al.
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