Improving organisation to improve care: ERN ReCONNET organisational reference model for systemic sclerosis patients' care pathway.

Autor:	Talarico R; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Marinello D; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Palla I; Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy., Cannizzo S; Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy., Galetti I; FESCA Federation of European Scleroderma Associations, Saint Maur, Belgium.; GILS Gruppo Italiano Lotta alla Sclerodermia, Milan, Italy., Farrington S; FESCA Federation of European Scleroderma Associations, Saint Maur, Belgium., Aguilera S; SRUK Scleroderma & Raynaud's UK, London, UK.; Spanish Association for Antiphospholipid Syndrome (SAF España), Elche, Spain., Andersen J; Lupus Europe, Brussels, Belgium., Ceccatelli E; Scuola Superiore Sant'Anna, Pisa, Italy., Cornet A; Lupus Europe, Brussels, Belgium., Cutillas G; AEE Asociación Española de Escleredermia (Spanish Scleroderma Association), Madrid, Spain., Esteves M; Portuguese Association of Scleroderma patients, Moncao, Portugal., Frank C; Flemish Association for Hereditary Connective Tissue Disorders (Bindweefsel.be), Koersel, Belgium., Leite C; University of Minho, Braga, Portugal., Niehaus G; FESCA Federation of European Scleroderma Associations, Munich, Germany., Perez Gomez E; AEE Asociación Española de Escleredermia (Spanish Scleroderma Association), Madrid, Spain., Polfliet K; Sclero'ken vzw Belgische vereniging Sclerodermie, Sinaai, Belgium., Sandulescu S; Romanian Association of Patient with Scleroderma, Bucarest, Romania., Schriemer R; Nationale vereniging voor mensen met lupus, APS, sclerodermie en MCTD (Dutch Association for people living with lupus, APS, Scleroderma and MCTD), Utrecht, The Netherlands., Barsotti S; Rheumatology Outpatient Clinic and Internal Medicine, Livorno Hospital, Livorno, Italy., Bellando-Randone S; Division of Rheumatology, Department of Experimental and Clinical Medicine, University of Florence, AOU Careggi, Florence, Italy., Beretta L; Referral Center for Systemic Autoimmune Diseases, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano, Milan, Italy., Bernardino V; Unidade de Doenças Autoimunes, Hospital Curry Cabral, Centro Hospitalar Universitário Lisboa Central, Unidade Local de Saúde S. José, Centro Clínico Académico de Lisboa, Nova Medical School, Universidade Nova de Lisboa, Lisbon, Portugal., Boleto G; Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal.; Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal., Bombardieri S; University of Pisa, Pisa, Italy., Burmester G; Department of Rheumatology and Clinical Immunology, Universitätsmedizin Berlin, corporate member of Freie Universität Berlin, Humboldt-Universität zu Berlin, Berlin, Germany.; Berlin Institute of Health, Berlin, Germany., Cavazzana I; Rheumatology and Clinical Immunology Unit, ASST-Spedali Civili and University of Brescia, Brescia, Italy., Codullo V; Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy., Cutolo M; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Genoa, Italy., Dalm V; Department of Internal Medicine and Department of Immunology, Erasmus Medical Center, Rotterdam, The Netherlands., Damian L; Department of Rheumatology, County Emergency Clinical Hospital Cluj-Napoca, Centre for Rare Musculoskeletal Autoimmune and Autoinflammatory Diseases, Cluj-Napoca, Romania., Della Rossa A; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Doria A; Rheumatology Unit, Department of Medicine, University of Padova, Padua, Italy., Farhat MM; Department of Internal Medicine and Clinical immunology, Referral Centre for Rare Systemic Auto-immune Diseases North and North-West Mediterranean and Guadeloupe, University of Lille, Lille, France.; Inserm, CHU Lille, U1286 - INFINITE, University of Lille, Lille, France., Fonseca JE; Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal.; Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal., Hachulla E; Department of Internal Medicine and Clinical immunology, Referral Centre for Rare Systemic Auto-immune Diseases North and North-West Mediterranean and Guadeloupe, University of Lille, Lille, France.; Inserm, CHU Lille, U1286 - INFINITE, University of Lille, Lille, France., Houssiau F; Department of Rheumatology, Cliniques Universitaires Saint-Luc, Brussels, Belgium., Grazia Lazzaroni M; Rheumatology and Clinical Immunology Unit, ASST-Spedali Civili and University of Brescia, Brescia, Italy., Limper M; Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands., Lorenzoni V; Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy., Montecucco C; Department of Rheumatology, IRCCS Policlinico San Matteo Foundation, Pavia, Italy., Mosca M; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Mouthon L; Service de Médecine Interne, Hôpital Cochin, Centre de Référence Maladies Systémiques Autoimmunes et Autoinflammatoires Rares d'Ile de France, de l'Est et de l'Ouest, Assistance Publique-Hôpitaux de Paris (AP-HP), Université de Paris, Paris, France., Müeller-Ladner U; Department of Rheumatology and Clinical Immunology, Campus Kerckhoff, Justus Liebig University of Giessen, Bad Nauheim, Germany., Pha M; Service de Médecine Interne 2, centre de réference maladies rares d'Ile-de-France, Centre et Martinique, Assistance Publique-Hôpitaux de Paris (AP-HP), Groupement Hospitalier Pitié-Salpêtrière, Paris, France., Ponte C; Rheumatology Department, Hospital de Santa Maria, Centro Hospitalar Universitário Lisboa Norte, Lisbon Academic Medical Centre, Lisbon, Portugal.; Rheumatology Research Unit, Instituto de Medicina Molecular, Faculdade de Medicina, Universidade de Lisboa, Lisbon, Portugal., Spierings J; Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands., Sulli A; Research Laboratory and Academic Division of Clinical Rheumatology, Department of Internal Medicine, IRCCS Polyclinic Hospital San Martino, University of Genoa, Genoa, Italy., Taulaigo AV; Unidade de Doenças Autoimunes, Hospital Curry Cabral, Centro Hospitalar Universitário Lisboa Central, Unidade Local de Saúde S. José, Centro Clínico Académico de Lisboa, Nova Medical School, Universidade Nova de Lisboa, Lisbon, Portugal., Ticciati S; Rheumatology Unit, Azienda Ospedaliero Universitaria Pisana, Pisa, Italy., Tincani A; Rheumatology and Clinical Immunology Unit, ASST-Spedali Civili and University of Brescia, Brescia, Italy., Toplak N; Department of Allergology, Rheumatology and Clinical Immunology, University Children's Hospital Ljubljana, University Medical Centre Ljubljana, Ljubljana, Slovenia.; Department of Pediatrics, Faculty of Medicine, University of Ljubljana, Ljubljana, Slovenia., Trieste L; Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy., van Hagen PM; Department of Internal Medicine, Division of Allergy & Clinical Immunology and Department of Immunology, Erasmus MC University Medical Center, Rotterdam, The Netherlands., van Laar J; Department of Rheumatology and Clinical Immunology, University Medical Center Utrecht, Utrecht University, Utrecht, The Netherlands., Vanthuyne M; Department of Rheumatology, Cliniques Universitaires Saint-Luc, Pôle de Pathologies Rhumatismales Inflammatoires et Systémiques, Université Catholique de Louvain, Brussels, Belgium., Vigone B; Referral Center for Systemic Autoimmune Diseases, Fondazione IRCCS Ca' Granda Ospedale Maggiore Policlinico di Milano, Milan, Italy., de Vries-Bouwstra JK; Department of Rheumatology, Leiden University Medical Center, Leiden, The Netherlands., Zen M; Rheumatology Unit, Department of Medicine, University of Padova, Padua, Italy., Turchetti G; Institute of Management, Scuola Superiore Sant'Anna, Pisa, Italy., Smith V; Department of Rheumatology, Ghent University Hospital Department of Internal Medicine, Ghent, Belgium.; Unit for Molecular Immunology and Inflammation, VIB Inflammation Research Centre (IRC), Ghent, Belgium., Matucci Cerinic M; Unit of Immunology, Rheumatology, Allergy and Rare Diseases, IRCCS San Raffaele Hospital, Milan, Italy.
Jazyk:	angličtina
Zdroj:	Journal of scleroderma and related disorders [J Scleroderma Relat Disord] 2024 Oct 07, pp. 23971983241269109. Date of Electronic Publication: 2024 Oct 07.
DOI:	10.1177/23971983241269109
Abstrakt:	Objective: To optimise the organisation of care and encourage the adoption of good clinical practices, the RarERN Path © methodology was designed within ERN ReCONNET. The aim of our work was to report the application of RarERN Path © on systemic sclerosis within the ERN ReCONNET centres, providing a feasible and flexible organisational reference model for optimising the systemic sclerosis care pathway in different countries. Methods: RarERN Path © is a six-phase methodology which enables the creation of a reference organisational model co-designed on the basis of the expertise of different stakeholders. It foresees six phases, ranging from the map of existing patients' care pathways and patients' stories, to the consensus on a common organisational patient care pathways, and its key performance indicators definition. Results: The agreed reference model highlights the importance of having an organisational flow for referrals that foresees how patients may access directly the specialised unit from the different referrals. Specific specialised visits were considered as mandatory to be organised and they included cardiologist, pneumologist, gastroenterologist, psychologist, nephrologist, dermatologist, wound care specialist/nurses and other healthcare professionals (such as nurses, social workers and nutritional counselling). Moreover, specific services related to therapy were highlighted as strongly recommended to be organised, mainly represented by infusion therapy and wound care, as well as occupation therapy and physiotherapy. Conclusion: The organisational model emerged from our investigation emphasises that the organisation of specific services for systemic sclerosis treatment should be organised as a solid support for implementing the existing recommendations on systemic sclerosis management in real life. Competing Interests: The author(s) declared no potential conflicts of interest with respect to the research, authorship and/or publication of this article. (© The Author(s) 2024.)
Databáze:	MEDLINE
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