Can Routine Use of Patient-Reported Outcomes Help Guide Systemic Sclerosis Chronic Disease Care?

Abstract

Background The implementation of patient reported outcome measures (PROMs) is increasingly recognized as a critical aspect of clinical practice. The use of PROMs is particularly important in patients with complex, chronic medical disease that have heterogeneous, subjective symptoms. In this report, we examine the association of traditional markers of disease severity in the systemic sclerosis (SSc) patient population with PROMs that focus on mental health and physical function. Methods SSc patients seen in the University of Utah Chronic Disease Clinic were offered a personal health assessment that included a current health visual analog scale (VAS), PROMs that assessed mental health [Patient-Reported Outcomes Measurement Information System (PROMIS) Bank v1.0 depression], and physical function (PROMIS Bank v1.2 physical function). All PROMIS instruments are normed such that an average person has a score of 50. The assessment was administered on a tablet while patients waited to see the physician(s) for SSc care visits and uploaded in real-time to the electronic medical record for physician review. Results During a six-month period, 137 unique SSc patients began a PROM assessment. All 137 patients completed the VAS and PROMIS physical function; 133 completed the PROMIS depression scales. Overall, scores were 53.1 and 43.2 for depression and physical function, respectively. Relatively mild patients without end-organ damage or disease activity due to SSc did not have significant differences in perceived reduction in general health, physical function, or depression when compared to SSc patients with digital ulcerations, interstitial lung disease, pulmonary arterial hypertension, inflammatory arthritis, inflammatory myositis, or joint contractures. Conclusions Patients with chronic disease report depression and physical health scores that are independent of traditional physician-perceived disease activity or damage. Disease burden associates with the presence of a chronic disease, but is independent of severity. Assessment of PROMs provides an additional perspective on health status for chronic disease care.