Transforming Care for Transthyretin Amyloidosis: Findings and Recommendations from the CARABELA Initiative

Background: Transthyretin amyloidosis (ATTR) is a multisystem, progressive, and potentially fatal condition. It is significantly under-recognized, leading to delayed diagnosis and treatment and poor outcomes. The CARABELA-ATTR initiative aims to address the challenges of ATTR management in the Spanish healthcare system. Methods: This initiative promotes collaboration between scientific societies, clinicians, and the pharmaceutical industry to optimize ATTR care using lean methodology. It included four phases: (1) characterization of ATTR clinical pathways; (2) validation and prioritization of areas for improvement and selection of quality indicators (QIs); (3) co-creation of solutions; and (4) dissemination of results. Results: A generic ATTR patient journey was defined, identifying four healthcare models with varying coordination and resources. Multidisciplinary discussions identified 13 areas for improvement, including deficient multidisciplinary coordination, lack of standardized diagnostic protocols, and uneven resource distribution. A set of QIs covering all aspects of care was defined. Validated solutions included establishing multidisciplinary teams, standardizing diagnostic and treatment protocols, and ensuring equitable access to advanced diagnostics and treatments. Conclusions: The CARABELA-ATTR initiative provides a framework that emphasizes multidisciplinary coordination, diagnostic and treatment protocols, continuous education for healthcare professionals and patients, and equitable access to resources, aiming to improve patient outcomes and quality of life.