The Collaborative National Quality and Efficacy Registry for Scleroderma: Association of Resource Utilization and Gastrointestinal Tract Symptoms in Early Disease

Sarah Luebker¹, Tracy Frech¹, Shervin Assassi², Jessica Gordon³, Elana Bernstein⁴, Virginia Steen⁵, Laura Hummers⁶, Ami Shah⁷, Carrie Richardson⁸, Dinesh Khanna⁹, Flavia Castelino¹⁰, Lorinda Chung¹¹, Faye Hant¹², Vicki Shanmugam¹³, John VanBuren¹⁴, Jessica Alvey¹⁴, Monica Harding¹⁴, Luke Evnin¹⁵ and Nora Sandorfi¹⁶, ¹Vanderbilt University Medical Center, Nashville, TN, ²McGovern Medical School, University of Texas, Houston, TX, ³Hospital for Special Surgery, New York, NY, ⁴Columbia University, New York, NY, ⁵Georgetown University School of Medicine, Washington, DC, ⁶Johns Hopkins Univerisity, Baltimore, MD, ⁷Johns Hopkins Rheumatology, Baltimore, MD, ⁸Northwestern University, Chicago, IL, ⁹Division of Rheumatology, Department of Internal Medicine, Scleroderma Program, University of Michigan, Ann Arbor, MI, ¹⁰Massachusetts General Hospital, Boston, MA, ¹¹Stanford University, Stanford, CA, ¹²Medical University of South Carolina, Charleston, SC, ¹³George Washington University, Washington, DC, ¹⁴University of Utah, Salt Lake City, UT, ¹⁵Scleroderma Research Foundation, Brisbane, CA, ¹⁶University of Pennsylvania, Philadelphia, PA

Meeting: ACR Convergence 2022

Keywords: registry, Systemic sclerosis

Session Information

Date: Sunday, November 13, 2022

Title: Systemic Sclerosis and Related Disorders – Clinical Poster I

Session Type: Poster Session B

Session Time: 9:00AM-10:30AM

Background/Purpose: Health costs and resource utilization are important in chronic disease management. Systemic sclerosis (SSc) is a multi-organ system disease with outcomes that are often measured in terms of pulmonary, cardiovascular, or renal outcomes. However, the gastrointestinal tract (GIT) is the most frequently extra-cutaneous organ involved in SSc and a significant source of morbidity for patients. Resource utilization has not been examined in terms of GIT symptoms in SSc. This project examines the association of resource utilization with GIT symptoms in the Collaborative National Quality and Efficacy Registry (CONQUER) registry.

Methods: The inclusion criteria for this project included CONQUER participants that had completed a minimum of two serial Scleroderma Clinical Trials Consortium University of California Los Angeles Gastrointestinal Tract Questionnaire (GIT 2.0) and the resource utilization questionnaire (RUQ). Patients were categorized by total GIT 2.0 severity category change: none-to-mild (0.49); moderate (0.50-1.00), and severe-to-very severe (1.01-3.00) at baseline and at the subsequent visit. Four subsequent categories were created: no change (none-to-mild), improvement in category, worsening in category, and no change (moderate-to-severe). The RUQ includes information on visits to health professionals, diagnostic procedures, purchased aids, alternative treatments, outpatient procedures and surgeries, hospitalizations, rehabilitation or nursing home admission, time spent seeing physicians or other health professionals and medical tests, and need of an accompanying person.

Results: At the time of data analysis on May 4, 2022, there were 399 enrolled CONQUER participants that met project inclusion criteria. The sociodemographic and disease characteristics of those 399 participants categorized by change in GIT symptoms are shown in Table 1. Most participants (n=208, 52%) had stable mild GIT symptoms at all observed clinical assessments. The presence of digital ulcers and GAVE was not associated with GIT change category. As shown in Table 2, the participants with persistently severe GIT symptoms used the most resources, specifically visits to health professionals, endoscopy, colonoscopy, mobility aids, and inpatient hospitalization.

Conclusion: The RUQ informs the impact of SSc on direct medical costs. Our project demonstrated that GIT symptoms that are persistently worse occur equally in limited and diffuse SSc and regardless of antibody subtype. Improvement in GIT symptoms can result in less resource utilization and is an important focus for CONQUER.

Patient Characteristics by GIT score

Summary of Resource Utilization by GIT Group Change

Disclosures: S. Luebker, None; T. Frech, None; S. Assassi, Boehringer-Ingelheim, Janssen, Novartis, AstraZeneca, CSL Behring, AbbVie/Abbott; J. Gordon, None; E. Bernstein, None; V. Steen, None; L. Hummers, Boehringer-Ingelheim, Corbus Pharmaceuticals, Cumberland Pharmaceuticals, Kadmon Corporation, Medpace, CSL Behring, Mitsubishi Tanabe, Horizon Pharmaceuticals; A. Shah, Arena Pharmaceuticals, Medpace/Eicos, Kadmon Corporation; C. Richardson, None; D. Khanna, Boehringer Ingelheim, Genentech, Prometheus, Horizon, Chemomab, Talaris, Gesynta, Amgen, Acceleron, Actelion, Bayer, CSL Behring, Paracrine Cell Therapy, Mitsubishi Tanabe, Theraly, Eicos Sciences; F. Castelino, Boehringer-Ingelheim; L. Chung, None; F. Hant, None; V. Shanmugam, None; J. VanBuren, None; J. Alvey, None; M. Harding, None; L. Evnin, None; N. Sandorfi, None.

To cite this abstract in AMA style:

Luebker S, Frech T, Assassi S, Gordon J, Bernstein E, Steen V, Hummers L, Shah A, Richardson C, Khanna D, Castelino F, Chung L, Hant F, Shanmugam V, VanBuren J, Alvey J, Harding M, Evnin L, Sandorfi N. The Collaborative National Quality and Efficacy Registry for Scleroderma: Association of Resource Utilization and Gastrointestinal Tract Symptoms in Early Disease [abstract]. Arthritis Rheumatol. 2022; 74 (suppl 9). https://acrabstracts.org/abstract/the-collaborative-national-quality-and-efficacy-registry-for-scleroderma-association-of-resource-utilization-and-gastrointestinal-tract-symptoms-in-early-disease/. Accessed .

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