Teya Dahabra
Pronouns:
Research Mentor(s): Dinesh Khanna
Research Mentor School/College/Department: Rheumatology / Medicine
Program:
Authors: Teya Dahabra, Amy Li, Neda Kortam, Rosemary Gedert, Yen Chen, Alain Lescoat, Dinesh Khanna
Session: Session 5: 2:40 pm – 3:30 pm
Poster: 36
Abstract
Introduction/Background: Systemic sclerosis (SSc) is a rare autoimmune disease often characterized by thickening of the skin and that impacts internal organ involvement and quality of life (1). Limited cutaneous systemic sclerosis (lcSSc) is the most frequent subset which affects approximately 60% of all patients. lcSSc is characterized by skin involvement that can involve distal extremities including hands, elbows, feet, and legs with or without face involvement. CRISTAL (Combined Response Index for a Scleroderma Trial Assessing Limited SSc) is a study that aims to create a combined response index to better measure symptoms and outcomes for lcSSc patients, particularly for use in clinical trials, by identifying relevant patient-reported outcomes (PROs) and assessing treatment response for lcSSc patients. Our team initially identified PRO items through focus groups analyzing patient experiences. A scoping literature review (SLR) examined existing domains and items. Following, an international online Delphi exercise involving lcSSc experts suggested additional items and outcome measures. Methods: Current work in CRISTAL is focusing on the cognitive interviews (CIs) to assess the most appropriate symptoms and domains for lcSSc based on patients’ perspectives. We have interviewed 17 patients with an lcSSc diagnosis of less than seven years. The current version of the CRISTAL PRO (V8.0) includes 40 items covering domains from lcSSc deemed important from the patient perspective. Results: Following 17 cognitive interviews with lcSSc patients, revisions were made to survey items, particularly regarding Interstitial Lung Disease (ILD) and Digital Ulcerations (DU). The research team improved relevance and phrasing of survey items based on subjects’ concerns. Conclusions: These cognitive interviews have led to important identification of PRO items that are relevant to lcSSc. Next, at least 4 more CIs will be conducted which will produce the preliminary PRO that will be included in a longitudinal cohort to validate the items. References: (1) Lescoat A, Sandler RD, Zimmermann F, Roofeh D, Hughes M, Pauling JD, Murphy SL, Chen YT, Townsend W, Buch MH, Khanna D. Domains and outcome measures for the assessment of limited cutaneous systemic sclerosis: an international collaborative scoping review. Rheumatology (Oxford). 2022 Aug 3;61(8):3132-3148. doi: 10.1093/rheumatology/keac049. PMID: 35094049; PMCID: PMC9338174.
