Modelling the integration of care among professionals for children assisted with Long–Term Ventilated : A MOCHA study

Abstract

Introduction: Children dependent on Long-Term Ventilation (LTV) need the planning, provision and monitoring of complex services generally provided at home by professionals belonging to different settings. The collaboration among professionals improves the efficiency and the continuity of care especially when treating children with complex needs. In this paper patterns of collaboration have been analysed across the 30 EU/EEA countries of the MOCHA project using Unified Modelling Language (UML). Methods: The level of collaboration was defined analysing the answers provided by local Country Agents (CAs) in a questionnaire adapted from standards of care for children with complex care needs. Particular attention was given to: management of the personalized plan, organization of the transition from the hospital to the child’s home, provision of general and preventive services and access to specialized services. Responses of the CAs were summarized using UML to capture: the professionals involved in each activity and their configuration in a multidisciplinary team (MDT) (Use case diagram); the flow of activities performed and the messages exchanged by the different actors/teams taking into account the location and the timeline of each activity (Activity diagram). Results: Twenty-three CAs responded to the questionnaire. Within a high variety of patterns of collaboration, primary care professionals are involved in the majority of countries providing general services, while specialists continue to be a reference point also when the child is discharged at home. Moreover, the presence of a social worker within a MDT indicates a trend of including the social component for the children and their families. The adoption of a personalized plan is one of the optimum features in the treatment of complex care, in particular considering that it should include the procedures to access care in case of medical crisis. Discussion: This approach provides important indications on the efficiency in performing and organizing health-related activities. The association of identified activities with data, such as number and cost of professionals, health outcomes and waiting times, could provide an in-depth analysis indicating best practices in the provision of care. Conclusions: The adoption of a business process analysis allowed us to identify different patterns of collaboration that may be distributed along a continuum of integration. Moreover, the use UML made it possible to represent the different organizational features in place in the MOCHA countries to manage children with LTV in a comparable way. Lessons learned: The adoption of a business process analysis contributed to the analysis of the integration of care among the primary, secondary and social level. It captured the patterns of care delivery in the highly dynamic, complex and multi-disciplinary nature of healthcare processes. Limitations: The description of the care process is provided by a single CA that describes the actual situation in his/her country. Further analysis can help to capture regional variations, differences in terms of services provided in urban and rural areas or changes depending on the severity. Suggestions for future research: Compare the results obtained for LTV with other complex care needs analysed in MOCHA such as, traumatic brain injury, intractable epilepsy.

Keywords

• children
• long term ventilation
• level of collaboration
• europe