At the end of June, ROADMAP’s Outcome Definition team submitted a combined report of two important Deliverables. The D2.3 Stakeholder generated lists of priority RWE relevant outcomes as well as D2.4 Disease progression and outcomes classification matrix.
In the process of developing these reports, the team has conducted a range of research, public involvement and review activities using a variety of sources and methods in order to define a list of priority outcomes that are of most relevance to key stakeholder groups, and to produce a disease progression and outcomes classification matrix that identifies priority outcomes at each stage of disease severity. A mixed methods analysis of the combined results of the workstreams has identified a core set of priority outcomes including:
- Functional ability and independence
- Patient quality of life
- Quality of the carer’s and family’s lives
- Behavioural and neuropsychiatric symptoms
- Cognitive abilities
The results of the analysis highlight changes in the relative prioritisation of these outcomes across the stages of disease progression and offer insights into the factors and outcome subcategories that are driving their prioritisation.
Full reports of the workstreams that informed the analysis are provided alongside this deliverable as individual appendices. The whole reports are available for download here.