Session Information
Session Type: Abstract Submissions (ACR)
Background/Purpose
The National Institutes of Health Patient-Reported Outcomes Measurement Information System (PROMIS®) roadmap initiative is a cooperative research program designed to develop, evaluate, and standardize item banks to measure patient-reported outcomes (PROs) across different medical conditions as well as the US population (www.nihpromis.org). It has comprehensive items banks that assess physical, mental, and social well-being. The aim of this study was to compare the PROMIS survey between the scleroderma patients at an academic center and patient-based foundations as this has implications for large epidemiological studies (such as Scleroderma Patient Intervention Network).
Methods
A study titled ‘PROMIS in rheumatology’ was created in the Assessment center website. This study contained 13-PROMIS instruments. Patients seeking care in the academic Scleroderma clinic were approached to participate in the PROMIS survey. Patients were also recruited from the Scleroderma patient-based foundations (SF) namely – the Scleroderma Foundation and the Federation of European Scleroderma Associations, through the respective social media pages and e-newsletters. Average T-scores of the patient-based foundation scleroderma cohort were compared with those of the UM scleroderma patient cohort.
Results
Thirty-six patients at UM and 241 patients from SF have so far completed the survey. In both groups, the T-scores in the following domains were approximately 1 standard deviation worse than the United States (US) general population (GP) – fatigue, physical function, pain interference, satisfaction in roles and activities. Anger and social isolation banks were comparable to US GP. In comparison to the UM scleroderma cohort, the T-scores of the SF patient cohort was significantly worse for pain behavior and social isolation (Table, p< 0.05); however, the differences were not clinically meaningful.
Conclusion
The patients with SSc have decrements in health-related quality of life on PROMIS measures when compared to the US general population. There were no meaningful differences in the two cohorts, suggesting that patients from scleroderma clinic and patient foundations can be approached for non-pharmacologic intervention trials.
Table 1: Comparison of T-scores of UM and SF patient cohorts
|
PROMIS item banks |
UM Scleroderma |
Scleroderma patient foundations |
p-value |
||
|
N |
Mean |
N |
Mean |
||
|
Anger |
36 |
51.4 |
238 |
52.0 |
0.75 |
|
Anxiety |
36 |
55.1 |
238 |
54.5 |
0.57 |
|
Depression |
36 |
54.4 |
241 |
54.5 |
0.57 |
|
Fatigue |
35 |
60.4 |
240 |
60.9 |
0.49 |
|
Pain behavior |
36 |
56.4 |
238 |
56.6 |
0.04 |
|
Pain interference |
36 |
59.3 |
240 |
60.4 |
0.48 |
|
Physical function* |
36 |
39.5 |
239 |
37.8 |
0.59 |
|
Physical function with mobility aid* |
36 |
41.7 |
238 |
38.8 |
0.56 |
|
Satisfaction in roles and activities* |
36 |
43.8 |
238 |
41.9 |
0.65 |
|
Sleep Disturbance |
36 |
56.7 |
239 |
56.5 |
0.29 |
|
Sleep related impairment |
36 |
58.1 |
239 |
56.8 |
0.19 |
|
Social activities (Ability to participate) * |
36 |
45.2 |
238 |
43.8 |
0.74 |
|
Social isolation |
36 |
48.7 |
238 |
50.8 |
0.04 |
*Lower score (T-score <50) means worse than average
Disclosure:
V. Nagaraja,
None;
V. Berrocal,
None;
K. Connolly,
None;
A. Kennedy,
None;
D. Seelmann,
None;
D. Khanna,
None.
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