Real-World Adherence to Systemic Sclerosis Quality Indicators: A Single-Center Quality of Care Study

Objective Systemic sclerosis (SSc) is associated with substantial morbidity and mortality, prompting the development of internationally endorsed quality indicators (QIs). However, real-world adherence to these standards remains incompletely characterized. We evaluated adherence to baseline and longitudinal SSc QIs and identified predictors of adherence in a specialized clinical practice.

Methods We conducted a retrospective cohort study including all patients with SSc managed at a tertiary SSc clinic between January 2016 and December 2024. Adherence to QIs was assessed across baseline screening (interstitial lung disease and pulmonary hypertension), longitudinal monitoring (pulmonary function testing, echocardiographic follow-up, skin assessment, and clinical documentation), and treatment and referral practices (digital ulcer management and rehabilitation). Multivariable logistic regression identified independent predictors of adherence.

Results Among 66 patients (mean age 46.2 [SD 12.9] years, 92% female), adherence to baseline screening was high, including high-resolution computed tomography (86%) and transthoracic echocardiography (TTE; 84%). Baseline treatment adherence was also high, with vasodilator therapy for all patients with active digital ulcers (100%). In contrast, longitudinal follow-up adherence was suboptimal, including annual pulmonary function testing (35%), follow-up TTE after a new decline in diffusing lung capacity for carbon monoxide (36%), dyspnea documentation (63%), chest auscultation (27%), annual modified Rodnan skin score (19%), and physical therapy referral (37%). Older age, longer disease duration, diffuse cutaneous subtype, and pulmonary hypertension independently predicted lower adherence.

Conclusion Despite strong baseline adherence, major gaps persist in longitudinal monitoring, documentation, and rehabilitation, highlighting key targets for quality improvement.