The JPND Action Group on palliative and end-of-life care has published its report, bringing together for the first time an analysis of gaps and collation of needs and opportunities for neurodegeneration research across JPND countries.
JPND is currently investigating the available evidence and gaps in knowledge in palliative care research in the field of neurodegenerative diseases, with a view to implementing actions within the reach of its global research community.
A JPND Action Group on Palliative and End-of-Life Care met during 2014 and has reported back to JPND. The group was tasked with:
- Analysing the nature and scale of relevant palliative and end-of-life care research initiatives among JPND member countries and EU-funded initiatives.
- Consulting with the research community to establish the value of JPND actions.
- Identifying the gaps within current palliative care research on ND and scoping the requirements to be considered in areas of unmet need.
Implementation of JPND actions in this area will be based on the advice in the report. These actions may include shared working across JPND member countries, funding of competitive calls, coordination of best practices and organization of transnational initiatives designed to share knowledge and provide training that does not currently exist in this research field.
The report can be downloaded at the link below.
As identified in the report, a number of implementation challenges will need to be overcome in order for JPND to support and facilitate research that informs how to shape palliative care across neurodegenerative diseases. The report also identified a number of areas where further thinking is specifically needed to provide the necessary consensus and framework to support future studies of impact for the field. These were:
- Advance Care Planning which involves carer and family engagement in planning and decision-making over time.
- The challenges of working with cognitive impairment in terms of communication, symptom management and end of life care.
- The effectiveness of education + training interventions and linked competencies in practice for a range of generalist and specialist practitioners charged with the care of ND patients.
- Engaging primary care providers (e.g. GPs, etc.) in palliative care planning.
- Engaging with national voluntary groups and policy makers on actions and outcomes for ND
Priorities for action will be set by JPND Management Board for announcement in 2015.