Many people with systemic sclerosis (SSc) describe feeling a lot of burden from physical changes. For a study, researchers sought to determine the patient acceptable symptom state (PASS) for the burden associated with changes in appearance in patients with SSc.

In the Scleroderma Patient-centered Intervention Network Cohort, a cross-sectional survey of 113 French patients with SSc participated in the SCISCIF II trial. A self-administered numeric rating scale was used to evaluate the burden caused by appearance changes (0, no burden to 10, maximal burden). A unique anchoring question was used to gauge the acceptability of the symptom condition. Participants who responded affirmatively belonged to the group of patients who accepted their current state of symptomatology. The load resulting from changes in appearance was assessed using the 75th percentile technique.

In the study, 82/113 (73%) of the participants in the SCISCIF II trial had assessments of the load from appearance changes and responses to the anchoring question. The mean illness duration was 9.6 (SD 6.5) years, the median age was 55 (IQR 24), and 32/80 (or 40%) of the subjects had diffuse cutaneous SSc. The load from changes in appearance was estimated by PASS to be 4.8 (95% CI 1.0-7.0) of 10 points.

The analysis offered a PASS approximation of the burden caused by changes in appearance. The estimate may be used as a binary response criterion to evaluate the effectiveness of therapies that aim to reduce the burden caused by changes in appearance.