296
In 2009, Khanna et al. refi ned and improved upon the SSc-GIT 1.0 to create the
University of California, Los Angeles, Scleroderma Clinical Trials Consortium
Gastrointestinal Scale 2.0 (UCLA SCTC GIT 2.0) instrument. The UCLA SCTC
GIT 2.0 contains 34 items under 7 multi-item scales: refl ux, diarrhea, fecal soilage,
distention/bloating, emotional well-being, constipation, and social functioning [ 61 ].
Each item is scored on a scale from 0 to 3, except for the constipation and diarrhea
scales, which range from 0 to 2.5 and 0 to 2, respectively. Higher values indicate
worse HRQoL [ 28 , 49 , 61 ]. A total score can be calculated by averaging the scores
from 6 of the 7 scales (excluding constipation), which is then reported on a scale
from 0 to 3—again with higher values indicating a worse HRQoL [ 28 , 61 ].
The UCLA SCTC GIT 2.0 is feasible, quick, and has acceptable reliability (test–
retest and internal consistency) and validity [ 28 , 61 , 62 ]. This PROM remains the
only tool specifi c to SSc-related GI tract disease. Patients who described their GI
disease as mild scored lower on all 7 scales. The total score is reliable and useful for
describing overall disease burden and also enhances ability to discriminate between
mild, moderate, and severe involvement [ 61 ]. It can differentiate between subjects
with corresponding clinical gastrointestinal diagnoses and scores are responsive to
change regarding patient-reported severity [ 49 , 61 , 63 ]. In the authors’ opinion, the
UCLA SCTC GIT 2.0 likely has a ceiling effect where someone with signifi cant
daily diarrhea or GERD can improve moderately and still not change their score.
The UCLA SCTC GIT 2.0 questionnaire can help in the clinical and experimen-
tal measurement of SSc-related GI disease. The GIT VAS from the SHAQ can also
be used, but has not yet been compared to the UCLA SCTC GIT 2.0 scale. There are
other scales that may be used, but are not specifi c to SSc, such as the Gastrointestinal
Quality of Life Index [ 64 ].
Hand Function
Fibrosis of the skin of the hands, fl exion deformities, and other musculoskeletal
involvement commonly occur in SSc. Accordingly, hand function can be impaired,
creating diffi culties in daily activities. There are several questionnaires used to mea-
sure self-reported hand function in rheumatologic and musculoskeletal conditions.
A detailed review of various scales has been published [ 65 ].
The Cochin Hand Function Scale (CHFS, or Duruoz Hand Index) is a self-
reported scale used to measure functional disability of the hand with 18 items in
various activity domains, such as kitchen, hygiene, dressing, offi ce, and other [ 66 ].
The scales range from 0 (without diffi culty) to 5 (impossible), which are then
summed to produce a total disability score. It is easy to use and demonstrates con-
tent, construct, and convergent validity, and test–retest reliability [ 67 , 68 ]. CHFS
scores explained 75 % of the variance in HAQ scores and is a more SSc-specifi c
assessment of hand function [ 68 ]. Its ability to detect change has been proven in RA
and osteoarthritis, but has not yet been studied in SSc [ 69 – 71 ]. It was developed in
1996, so it may require an update refl ecting contemporary uses of the hands, such
as for using cell phones, texting, and typing on a computer keyboard [ 65 ].
R.E. Pellar et al.