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

Abstract

Objective: To optimise the organisation of care and encourage the adoption of good clinical practices, the RarERNPath© methodology was designed within ERN ReCONNET. The aim of our work was to report the application ofRarERN Path © on systemic sclerosis within the ERN ReCONNET centres, providing a feasible and flexible organisationalreference 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 existingpatients’ care pathways and patients’ stories, to the consensus on a common organisational patient care pathways, andits key performance indicators definition.Results: The agreed reference model highlights the importance of having an organisational flow for referrals thatforesees how patients may access directly the specialised unit from the different referrals. Specific specialised visitswere considered as mandatory to be organised and they included cardiologist, pneumologist, gastroenterologist,psychologist, nephrologist, dermatologist, wound care specialist/nurses and other healthcare professionals (such asnurses, social workers and nutritional counselling). Moreover, specific services related to therapy were highlighted asstrongly recommended to be organised, mainly represented by infusion therapy and wound care, as well as occupationtherapy and physiotherapy.Conclusion: The organisational model emerged from our investigation emphasises that the organisation of specificservices for systemic sclerosis treatment should be organised as a solid support for implementing the existingrecommendations on systemic sclerosis management in real life.