The Impact of Morphea on Quality of Life Over Time

BACKGROUND: Morphea is an inflammatory disorder that has subsequent clinical manifestations of sclerosis and atrophy of the dermis and underlying tissue. Resulting cosmetic disfigurement or functional impairments are likely to persist even after the transition to inactive disease. The impact of Morphea on a patient's self-reported health-related quality of life (HRQOL) is not well described in medical literature. OBJECTIVE: To determine the impact of specific clinical, treatment, and demographic variables on self-reported QoL over time of the Morphea in adults and children (MAC) cohort. As a secondary objective, to correlate physician measures to patient reported QoL measures in order to determine which aspects of morphea are important to patients that might not be addressed in physician based outcomes. METHODS: Adult patients of the MAC cohort with ≥ 2 visits with a recorded HRQOL measure were studied. Self-reported HRQOL was examined via three previously validated questionnaires. Each included patient had at least 2 Dermatology Life Quality Indexes (DLQI). In addition, the Skindex-29+3 with an added morphea specific subscale and the Short Form 36 were included when available. In order to capture physician assessment of disease, Physician Global Assessment of disease (PGA), Modified Rodnan Skin Score (MRSS) and Localized Scleroderma Skin Severity Index (LOSSI) with its damage correlate LOSDI were employed. RESULTS: A total of 110 adult patients with 307 visits were included in these analyses. The QoL for patients with morphea is shown to be worse than the general population, with mean scores below 50 for SF-36 PCS and MCS scores. Though there was a marked decrease in activity, as measured by a 68 percent change in both PGA-A and LOSSI, QoL measures only had slight improvement with an 11.34 percent change over the same course of time. The damage measures (PGA-D, LOSDI) had an average 6.66 percent improvement. Limitations: All patients were seen at one referral center, which resulted in a skew towards more severe forms of morphea. The sample size, though larger than anything to date, limits complexity of statistical analysis. CONCLUSION: A decrease in disease severity does not mean an improvement in QoL. Lesions often don't disappear even as they transition to inactivity but rather leave frequent permanent sequalae. This indicates a need for further studies examining treatment of residual cosmetic and functional sequalae.