A Dialogic Participatory Model Between Professionals and Patients for the Co-Creation of Transitioning Care Management Programmes in Rare Bone Diseases.

INTRODUCTION

Rare diseases are a group of heterogeneous conditions affecting fewer than 5 per 10,000 individuals in Europe, with rare bone diseases representing a clinically significant subgroup. Multiple osteochondromas, Ollier disease and Maffucci syndrome are multifocal benign rare disorders, characterised by bone deformities, functional limitations, with symptoms arising early in life and chronically progressing. Proper transition planned programmes to accompany patients moving from childhood to adulthood are limited. This study aims to describe the steps taken to establish a shared consensus on recommended actions for transitioning, by implementing a co-creative approach that involves healthcare professionals, a patient organisation (ACAR Aps), patients and families.

METHODS

The first step was the definition and development of a dialogic participatory model (DPM) performed by ACAR Aps with the guidance of an expert in healthcare management, which supported the definition of a guiding question. The second step was composed of a set of multidisciplinary brainstorming sessions aiming at answering the guiding question. The ACAR Aps were responsible for the third step, which consisted of the organisation and summary of the brainstorming sessions, leading to preliminary operational solutions. The final step comprised the collective validation during the patient organisation meeting. This discussion involved experts and members of the ACAR Aps community, providing an open forum to share, discuss and refine the preliminary recommendations.

RESULTS

The DPM resulted in the definition of 11 operational solutions to improve transitional care for patients with MO, OD and MS organised according to the entity primarily responsible for their implementation. These solutions constitute measures to address patients' priorities in the short- and medium-term.

CONCLUSION

The entire process represents a structured yet flexible environment for collaborative consensus-building and for the establishment of actionable, achievable and community-endorsed solutions.

PATIENT OR PUBLIC CONTRIBUTION: This study was conceived, designed and conducted by the ACAR Aps patient organisation. Patients and caregivers played a pivotal role in the research process, actively participating in roundtable discussions during the association's national convention. Their insights and lived experiences were instrumental in reviewing and refining the study's contents, ensuring that the findings accurately reflect the priorities and perspectives of the community.