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

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Authors: Aos A. Aboabat, Ala'a Al-Hammad, Aeaa Alhussin, Samiah A. Alqutub, Ibrahim A. AlMaghlouth, Nuha Nasser Alrajhi, Abdurhman S. Alarfaj, Mohamed K. Bedaiwi, Fehaid Ghali Alanazi, Eman M. Alqurtas, Mohammed A. Omair, Sindhu R. Johnson
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Abstract

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.

Fields of Study & Subjects

Systemic Sclerosis and Related Diseases Pulmonary Hypertension Research and Treatments Connective tissue disorders research

Publication details

Journal / source
The Journal of Rheumatology
Volume
53
Issue
8
Pages
jrheum.2025–1244
Publication date
15 March 2026
Language
EN