Clinical practice guidelines adherence, knowledge and awareness in rare and complex connective tissue diseases across Europe: results from the first ERN ReCONNET survey
Rosaria Talarico,
Frederic Houssiau,
Stefano Bombardieri,
Gerd Burmester,
Ilaria Galetti,
Eric Hachulla,
Ulf Mueller-Ladner,
Matthias Schneider,
Vanessa Smith,
Maurizio Cutolo,
Marta Mosca,
Jacob M van Laar,
Charissa Frank,
Ana Vieira,
Giuseppe Turchetti,
Joao Fonseca,
Diana Marinello
Affiliations
Rosaria Talarico
1AOUP, Rheumatology, Pisa, Italy
Frederic Houssiau
4Rheumatology Department, Cliniques Universitaires Saint Luc, Bruxelles, Belgium
Stefano Bombardieri
University of Pisa, Pisa, Italy
Gerd Burmester
Department of Rheumatology and Clinical Immunology, Charité Universitätsmedizin Berlin, Berlin, Germany
Ilaria Galetti
10Federation of European Scleroderma Association, Milan, Italy
Eric Hachulla
Department of Internal Medicine, Université de Lille, CHU de Lille, Lille, France
Ulf Mueller-Ladner
9 Department of Rheumatology and Clinical Immunology, Campus Kerckhoff, Justus-Liebig-University Giessen, Giessen, Germany
Matthias Schneider
Department of Rheumatology & Hiller Research Unit Rheumatology, UKD, Heinrich-Heine University, Duesseldorf, Germany
Vanessa Smith
Department of Rheumatology and Internal Medicine, Ghent University Hospital and Unit for Molecular Immunology and Inflammation, VIB Inflammation Research Center (IRC), Ghent, Belgium
Maurizio Cutolo
39 Laboratory of Experimental Rheumatology and Academic Division of Clinical Rheumatology, Department of Internal Medicine and Specialties, University of Genova, IRCCS San Martino Polyclinic Hospital, Genova, Italy
Marta Mosca
Rheumatology Unit, Department of Clinical and Experimental Medicine, University of Pisa, Pisa, Italy
Jacob M van Laar
Department of Rheumatology & Clinical Immunology, University Medical Centre Utrecht, Utrecht, The Netherlands
Charissa Frank
Bindweefsel.be, koersel, Belgium
Ana Vieira
Portuguese League Against Rheumatic Diseases (LPCDR), Lisbon, Portugal
Giuseppe Turchetti
Institute of Management, Scuola Superiore Sant`Anna, Pisa, Toscana, Italy
Joao Fonseca
4 Serviço De Reumatologia E Doenças Ósseas Metabólicas, Centro Hospitalar Universitário Lisboa Norte E.P.E, Lisboa, Portugal
Introduction The European Reference Network (ERN) ReCONNET is the ERN aimed at improving the management of rare and complex connective tissue and musculoskeletal diseases (rCTDs) across the European Union (EU). In the mission of ERN ReCONNET, clinical practice guidelines (CPGs) play a crucial role, representing a valid tool towards the harmonisation of the management of rCTDs while improving effectiveness and quality of care delivered to patients.Methods ERN ReCONNET developed two surveys to map the adherence to rCTDs CPGs among healthcare providers and to assess the knowledge and awareness of CPGs for their diseases among patients, family members and caregivers.Results The results of the surveys highlighted that healthcare professionals find it useful to apply CPGs in clinical practice (93%), while 62% of them experience difficulties and barriers in the application in their centres. Healthcare professionals also highlighted the need to develop CPGs for all rCTDs and to implement the use of the existing CPGs in clinical practice. On the other hand, patients, families and caregivers are relatively aware of the purpose of CPGs (51%) and 62% of them were aware of the existence of CPGs for their disease. Patient-friendly versions of CPGs and patients’ lifestyle guidelines should be systematically developed contributing to the empowerment of patients in the disease management.Conclusion ERN ReCONNET is addressing the main issues identified in the results of the survey, promoting practical actions for the local adaptation of CPGs across Europe, improving their routine clinical use and increasing the awareness on CPGs among rCTDs patients, family members and caregivers.
