- Luebker, Sarah;
- Frech, Tracy;
- Assassi, Shervin;
- Skaug, Brian;
- Gordon, Jessica;
- Lakin, Kimberly;
- Bernstein, Elana;
- Luo, Yiming;
- Steen, Virginia;
- Shah, Ami;
- Hummers, Laura;
- Richardson, Carrie;
- Moore, Duncan;
- Khanna, Dinesh;
- Castelino, Flavia;
- Chung, Lorinda;
- Kapoor, Puneet;
- Hant, Faye;
- Shanmugam, Victoria;
- VanBuren, John;
- Alvey, Jessica;
- Harding, Monica;
- Shah, Ankoor;
- Makol, Ashima;
- Lebiedz-Odrobina, Dorota;
- Thomas, Julie;
- Volkmann, Elizabeth;
- Molitor, Jerry;
- Sandorfi, Nora
OBJECTIVES: SSc is associated with increased health-care resource utilization and economic burden. The Collaborative National Quality and Efficacy Registry (CONQUER) is a US-based collaborative that collects longitudinal follow-up data on SSc patients with <5 years of disease duration enrolled at scleroderma centres in the USA. The objective of this study was to investigate the relationship between gastrointestinal tract symptoms and self-reported resource utilization in CONQUER participants. METHODS: CONQUER participants who had completed a baseline and 12-month Gastrointestinal Tract Questionnaire (GIT 2.0) and a Resource Utilization Questionnaire (RUQ) were included in this analysis. Patients were categorized by total GIT 2.0 severity: none-to-mild (0-0.49); moderate (0.50-1.00), and severe-to-very severe (1.01-3.00). Clinical features and medication exposures were examined in each of these categories. The 12-month RUQ responses were summarized by GIT 2.0 score categories at 12 months. RESULTS: Among the 211 CONQUER participants who met the inclusion criteria, most (64%) had mild GIT symptoms, 26% had moderate symptoms, and 10% severe GIT symptoms at 12 months. The categorization of GIT total severity score by RUQ showed that more upper endoscopy procedures and inpatient hospitalization occurred in the CONQUER participants with severe GIT symptoms. These patients with severe GIT symptoms also reported the use of more adaptive equipment. CONCLUSION: This report from the CONQUER cohort suggests that severe GIT symptoms result in more resource utilization. It is especially important to understand resource utilization in early disease cohorts when disease activity, rather than damage, primarily contributes to health-related costs of SSc.