Patient_Reported_Outcome_Measures_in_Rheumatic_Diseases

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pain and can be a component of other assessments such as the SHAQ or SBI. Scoring
depends on the type of scale used, but, for example, may be a 15 cm scale that is con-
verted to a score from 0 to 3, where 1 cm equals 0.2 points, with 3 representing maxi-
mum pain [ 28 ]. Pain scales are valid alone or with other measures and correlate well
with other disease manifestations [ 17 , 30 , 32 ]. They have good test–retest reliability
[ 80 ] and are sensitive to change for certain effective treatments [ 81 ].
Pain in SSc is often multifactorial and can be the result of many disease pro-
cesses. Therefore, if a patient is experiencing pain, it is important to discern the
source in order to accurately utilize the outcome [ 28 ].


Fatigue


As with pain scales, there are no fatigue scales specifi c to SSc, despite the fact that
it is one of the most common complaints in SSc [ 8 , 15 ]. Several scales do exist,
however, for the assessment of fatigue for general use. A review of other acceptable
fatigue scales in various rheumatic diseases has been published [ 82 ]. Often a VAS
scale performs as well in studies as a long fatigue questionnaire.
The SF-36 Vitality subscale and Functional Assessment of Chronic Illness
Therapy (FACIT) Fatigue scale are commonly used tools to measure fatigue in
rheumatic diseases [ 83 ]. The FACIT fatigue scale was found to provide a more
complete coverage of the fatigue range in SSc and discriminates better than the
SF-36 Vitality subscale at moderate-to-high ranges of fatigue [ 83 ]. For these rea-
sons, the FACIT is suggested as the preferred measure of fatigue in SSc [ 83 ].


Dyspnea


Lung disease is a potential complication seen in scleroderma patients due to inter-
stitial lung disease (ILD) and pulmonary arteri al hypertension (PAH). These can
result in dyspnea, affecting quality of life. There are no fully validated dyspnea
questionnaires specifi c to SSc. However, the SHAQ and SBI have dyspnea sub-
scales. Additionally, the questionnaire developed by Mahler et al., including the
Baseline Dyspnea Index (BDI) and Transition Dyspnea Index (TDI) , has been
investigated for use in SSc [ 84 , 85 ]. Moreover, the Borg Dyspnea Index, which
measures the severity of dyspnea following a 6-min walk, has been partially vali-
dated in ILD and PAH [ 86 ].
The BDI and TDI are used to measure baseline severity and change in dyspnea
over time, respectively. The BDI assesses the magnitude, effort, and impairment of
varying tasks over a scale from 0 (severe) to 4 (unimpaired). These values are then
summed to calculate a baseline score. Within the TDI, the patient rates from −3
(major deterioration) to +3 (major improvement), which is then summed to give a
transition score [ 84 ]. The reliability has not been fully tested in SSc, but the con-
struct and face validity of this instrument have been partially demonstrated [ 87 , 88 ].
Validity was demonstrated for men with chronic obstructive pulmonary disease


R.E. Pellar et al.
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