Debra

The COSEB initiative aims for standardized and uniform measurement by developing core outcome sets for epidermolysis bullosa. This report describes the COSEB workshop organized in December 2023, which led to a broad stakeholder consensus-based roadmap. Moreover, it highlights novel features of COSEB, including the pro-active engagement of stakeholders from the very beginning and the appointment of a multi-stakeholder advisory panel.

There has been an increased focus on home care service provision in recent years, yet there are few data available about the provision of home and community occupational therapy for children and youth. To evaluate key elements of a service provision model for home care occupational therapy in terms of occupational performance outcomes, perception of care and cost. Eleven centres in Ontario and Quebec recruited 167 children and youth up to 18 years of age to a before and after study of occupational therapy services in the home and community. Occupational performance, quality of life and costs were measured at baseline and study end. Perception of care was measured at study completion. A statistically and clinically significant improvement in occupational performance was demonstrated (p < 0.001). The clients' families gave high ratings to the process of care provided by the occupational therapists. These data did not demonstrate a clear relationship between amount of service, cost and occupational performance outcome. Children receiving home and community occupational therapy services change in their occupational performance abilities. These changes are not directly related to the amount or focus of the occupational therapy services.