| Title: |
Improving organisation to improve care: ERN ReCONNET organisational reference model for systemic sclerosis patients’ care pathway |
| Authors: |
Talarico, Rosaria; Marinello, Diana; Palla, Ilaria; Cannizzo, Sara; Galetti, Ilaria; Farrington, Sue; Aguilera, Silvia; Andersen, Jeanette; Ceccatelli, Eva; Cornet, Alain; Cutillas, Gema; Esteves, Marco; Frank, Charissa; Leite, Catarina; Niehaus, Gabi; Perez Gomez, Elisabeth; Polfliet, Katleen; Sandulescu, Silvia; Schriemer, Rita; Barsotti, Simone; Bellando-Randone, Silvia; Beretta, Lorenzo; Bernardino, Vera; Boleto, Goncalo; Bombardieri, Stefano; Burmester, Gerd; Cavazzana, Ilaria; Codullo, Veronica; Cutolo, Maurizio; Dalm, Virgil; Damian, Laura; Della Rossa, Alessandra; Doria, Andrea; Farhat, Meryem-Maud; Fonseca, João Eurico; Hachulla, Eric; Houssiau, Frédéric; Grazia Lazzaroni, Maria; Limper, Maarten; Lorenzoni, Valentina; Montecucco, Carlomaurizio; Mosca, Marta; Mouthon, Luc; Müeller-Ladner, Ulf; Pha, Micheline; Ponte, Cristina; Spierings, Julia; Sulli, Alberto; Taulaigo, Anna Viola; Ticciati, Simone; Tincani, Angela; Toplak, Natasha; Trieste, Leopoldo; van Hagen, P. M.; van Laar, Jacob; Vanthuyne, Marie; Vigone, Barbara; de Vries-Bouwstra, Jeska K.; Zen, Margherita; Turchetti, Giuseppe; Smith, Vanessa; Matucci Cerinic, Marco |
| Contributors: |
Talarico, Rosaria; Marinello, Diana; Palla, Ilaria; Cannizzo, Sara; Galetti, Ilaria; Farrington, Sue; Aguilera, Silvia; Andersen, Jeanette; Ceccatelli, Eva; Cornet, Alain; Cutillas, Gema; Esteves, Marco; Frank, Charissa; Leite, Catarina; Niehaus, Gabi; Perez Gomez, Elisabeth; Polfliet, Katleen; Sandulescu, Silvia; Schriemer, Rita; Barsotti, Simone; Bellando-Randone, Silvia; Beretta, Lorenzo; Bernardino, Vera; Boleto, Goncalo; Bombardieri, Stefano; Burmester, Gerd; Cavazzana, Ilaria; Codullo, Veronica; Cutolo, Maurizio; Dalm, Virgil; Damian, Laura; Della Rossa, Alessandra; Doria, Andrea; Farhat, Meryem-Maud; Fonseca, João Eurico; Hachulla, Eric; Houssiau, Frédéric; Grazia Lazzaroni, Maria; Limper, Maarten; Lorenzoni, Valentina; Montecucco, Carlomaurizio; Mosca, Marta; Mouthon, Luc; Müeller-Ladner, Ulf; Pha, Micheline; Ponte, Cristina; Spierings, Julia; Sulli, Alberto; Taulaigo, Anna Viola; Ticciati, Simone; Tincani, Angela; Toplak, Natasha; Trieste, Leopoldo; Van Hagen, P. M.; Van Laar, Jacob; Vanthuyne, Marie; Vigone, Barbara; de Vries-Bouwstra, Jeska K.; Zen, Margherita; Turchetti, Giuseppe; Smith, Vanessa; Matucci Cerinic, Marco |
| Publisher Information: |
SAGE Publications Ltd |
| Publication Year: |
2025 |
| Collection: |
Padua Research Archive (IRIS - Università degli Studi di Padova) |
| Subject Terms: |
European Commission; European Reference Network; RarERN Path©; organisation of care; organisational reference model; patients’ care pathway; systemic sclerosis |
| Description: |
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. |
| Document Type: |
article in journal/newspaper |
| Language: |
English |
| Relation: |
info:eu-repo/semantics/altIdentifier/pmid/39544904; info:eu-repo/semantics/altIdentifier/wos/WOS:001331011400001; volume:10; issue:3; firstpage:625; lastpage:632; numberofpages:8; journal:JOURNAL OF SCLERODERMA AND RELATED DISORDERS; https://hdl.handle.net/11577/3584377 |
| DOI: |
10.1177/23971983241269109 |
| Availability: |
https://hdl.handle.net/11577/3584377; https://doi.org/10.1177/23971983241269109 |
| Rights: |
info:eu-repo/semantics/openAccess ; license:Creative commons ; license uri:http://creativecommons.org/licenses/by-nc/4.0/ |
| Accession Number: |
edsbas.3FAF49A7 |
| Database: |
BASE |