Quality standards for celiac disease comprehensive care units: A Spanish multidisciplinary consensus integrating professional expertise and patient perspectives

Abstract

Celiac disease (CD) is markedly underdiagnosed, with significant diagnostic delays, while long-term follow-up is often inconsistent or incomplete. Current CD care, marked by heterogeneity and limited standardization, fails to address these challenges. The Spanish Society for Celiac Disease aimed to define quality standards to support the design, implementation, and evaluation of comprehensive care units for CD. A structured consensus process was conducted using the Delphi methodology, with collaboration from the Spanish Association of Gastroenterology, the Spanish Society of Digestive Pathology, and the Spanish Society of Pediatric Gastroenterology, Hepatology and Nutrition, and patients and caregivers nominated by Spain’s three main celiac associations. This process defined 18 structural, 16 process, and 5 scientific-educational standards, providing guidance on human resources, infrastructure, diagnostic and therapeutic procedures, research, and continuous professional development. All but one standard reached a very high consensus, with a mean coefficient of variation of 9.1%. These standards provide a framework for centers of excellence in CD care, promoting multidisciplinary management and patient-centered outcomes. By integrating institutional expertise and patient perspectives, they ensure relevance, feasibility, and alignment with current clinical challenges, serving as a potential model for other healthcare systems and as a foundation for future accreditation processes.

Keywords: Celiac disease; Comprehensive care units; Delphi consensus; Multidisciplinary management; Patient-centered care; Quality standards

Core Tip: The Spanish Society for Celiac Disease, with major gastroenterology societies and patient representatives, establishes the first standardized quality standards for comprehensive care units for celiac disease in Spain. Through a multidisciplinary Delphi process, 18 structural, 16 process, and 5 scientific-educational standards were defined, achieving very high agreement (mean coefficient of variation: 9.1%). This consensus addresses variability in clinical practice and organizational models, ensuring equitable access to expertise, patient education, and structured follow-up. As an evidence-based and patient-centered approach, it promotes the harmonization of clinical care and continuous quality improvement, providing a robust model adaptable to international healthcare systems.