Patient-centered approaches for patients with systemic autoimmune rheumatic diseases: development and evolution

Expert Rev Clin Immunol. 2022 Feb;18(2):125-133. doi: 10.1080/1744666X.2022.2022477. Epub 2022 Jan 21.

Abstract

Introduction: European Reference Networks (ERNs) are dedicated to rare complex diseases. Systemic autoimmune rheumatic diseases (SARDs) comprise a group of disorders, some of which are rare, complex, and chronic, characterized by relapsing-remitting course and requiring targeted treatments for long periods; SARDs are also associated with various co-morbidities and therefore health-care infrastructures, at the highest level of expertise are required.

Areas covered: For the current work, literature on the basic characteristics of a center of excellence dedicated to SARDs, its advantages over the existing health infrastructures in order to improve health and social care, its contribution to the education of health-care workers, and the related research opportunities are presented. In addition, our experience, vision, and initiatives as a new member of the ERNs are reported.

Expert opinion: A restructure in healthcare policy and resource allocation, based on centers of expertise, is necessary to improve the medical care of patients with SARDs.

Keywords: ERN-RITA; ERN-Re CONNET: center of expertise; European reference networks (ERNs); center of excellence; immunological disorders; musculoskeletal autoimmune diseases; rare and complex diseases.

MeSH terms

  • Autoimmune Diseases* / therapy
  • Delivery of Health Care
  • Health Personnel
  • Humans
  • Patient-Centered Care
  • Rare Diseases / therapy
  • Rheumatic Diseases* / therapy