Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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PROs were identifi ed as commonly included: assessment of patient’s pain and
morning stiffness [ 9 ]. Furthermore, using these clinical symptoms, pain and morn-
ing stiffness, was considered to be important by experts to defi ne improvement or
fl are. Although including morning stiffness achieved the highest level of agreement
(94.7 % to defi ne remission and relapse), this group of experts previously questioned
its value [ 25 ]. Additionally, many older patients with rheumatic conditions rarely
consider themselves to be completely free from pain and stiffness, making the eval-
uation of remission more diffi cult in these patients. But other measures, as laboratory
data, may have also exhibited some limitations to evaluate remission/fl are. A relapse
of PMR can occur with normal C-reactive protein (CRP) and/or erythrocyte sedi-
mentation rate (ESR) and these acute phase reactants are not specifi c for PMR.
In 2003, the European Collaborating PMR group proposed the fi rst response
criteria for PMR based on a core set of 5 variables [ 26 ]. Pain on a VAS was selected
as the central measure for disease activity, being the only one mandatory in this core
set. The selection was based on the dominant role of pain in patients’ symptoms and
the proved sensitivity to change in pain on a VAS. Morning stiffness was also
included in this response criteria core set with CRP, elevation of upper limbs, and
the doctor’s global assessment, but only a change in 3 of these 4 is required to refl ect
a change in disease activity. Having 2 PROs included in a set of only 5 variables for
response highlights the importance of patient self-evaluation in PMR.
Based on the EULAR response criteria and in analogy with a simplifi ed disease
activity index (SDAI) for RA, a disease activity index for PMR has been proposed
[ 27 ]. This composite index, the PMR activity score (PMR-AS), includes pain on a
VAS and morning stiffness in minutes multiple by 0.1 to avoid a high weighting of
this specifi c symptom. PMR-AS shows a high correlation not only with a patient’s
global assessment, but also with patient satisfaction.
In general, using a composite index helps describe the clinical situation better,
adding feasibility. Furthermore, having a score as an absolute number helps in much
more easily comparing patients. Composite indices may be useful also to establish
disease activity categories, a crucial task to evaluate improvement/worsening or the
presence of fl ares, which occur frequently during the course of PMR [ 28 ].


Patient Reported Outcome Measures to Evaluate

Improvement in Patients with PMR in Routine Care

In consonance with the evaluation of disease activity in PMR through a compos-
ite index and to evaluate the performance of patient reported outcome measures
(PROMs) to document improvement in clinical status, a study was conducted at
Rush University Medical Center [ 29 ]. Quantitative assessment in rheumatic dis-
eases is complicated by the absence of a single measure that can be applied to
all individual patients with a specifi c diagnosis. Composite indices developed
for a specifi c diagnosis are used widely in clinical trials and other clinical


14 PROMs for Polymyalgia Rheumatica

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