Improving equity in cleft lip and/or palate care : findings from a European group concept mapping study

Abstract

Objective: To identify feasible and high-priority actions to improve the equitable provision of care for individuals with cleft lip and/or palate (CL/P) across Europe.

Design: Participatory mixed-methods study using group concept mapping.

Setting: European cleft and craniofacial care systems.

Patients and Participants: Sixty-five stakeholders from 29 countries, including healthcare professionals, researchers, teachers and representatives from patient organisations involved in CL/P care. Interventions: Participants generated, sorted and rated statements in response to a structured focus prompt addressing equity in CL/P care, with ratings of importance and ease of implementation.

Main Outcome Measure(s): Conceptual clusters of actions to improve equity in CL/P care and prioritisation of actions based on importance and feasibility.

Results: A total of 111 statements were analysed using multi-dimensional scaling and hierarchical cluster analysis, resulting in 6 conceptual clusters: person-centred care; healthcare professional training, awareness and knowledge; resources and availability; inclusiveness and support strategies; European standardisation and governmental health policies. These clusters aligned with micro-, meso- and macro-level domains. Go-Zone analysis identified 31 actions rated as both highly important and feasible, alongside 28 actions rated as highly important but difficult to implement, reflecting longer-term structural and policy challenges.

Conclusions: This study provides an empirically grounded, multi-level roadmap for advancing equitable and high-quality CL/P care across Europe. While immediate improvements can be achieved through targeted clinical and organisational actions, sustained progress requires coordinated policy and governance reform. The identified principles may provide insights for cleft care service providers beyond Europe who face similar systemic challenges.