Priority research questions identified by James Lind Alliance and All Ireland Institute of Hospice and Palliative Care (2015) |
How can access to palliative care services be improved for everyone regardless of where they are in the UK? James Lind Alliance #2 |
What are the benefits of Advance Care Planning and other approaches to listening to and incorporating patients’ preferences? Who should implement this and when? James Lind Alliance #3 |
What are the best ways to begin and deliver palliative care for patients with non-cancer diseases (such as COPD, heart failure, MND, AIDS, multiple sclerosis, Crohn’s disease and stroke)? James Lind Alliance #6 / AIIHPC #9 |
What are the best ways to assess and treat pain and discomfort in people at the end of life with communication and/or cognitive difficulties, perhaps due to motor neurone disease (MND), dementia, Parkinson’s disease, brain tumour (including glioblastoma) or head and neck cancer, for example? James Lind Alliance #10 |
Priority research questions identified in May 2016 workshop |
What are the limits and potential of proxy, i.e. family carers, decision making? |
How best to include people with dementia in research studies, to achieve useful and actionable outcomes? |
What is the economic benefit, if any, of care at home services for dementia, and other neurodegenerative disease? |
What are the factors that contribute to and build carer resilience in advanced dementia care? |
How can assessment and support through video technology be utilised? |
What are the most appropriate outcome measures to explore benefit (if any) of palliative care? These need to be validated in dementia, Parkinson’s disease, motor neuron disease, etc. |
What are the optimal methods to effect change in staff behaviours concerning palliative care for their patients with dementia? |
What is the optimal transferrable model of dementia palliative care? |
What is the incidence of, and how can we limit, chemical restraint through inappropriate antipsychotic prescribing in advanced dementia? |
What is the effect on quality of death and dying, of being transferred from an acute hospital to die at home? |
How can recognition of need be improved among primary care and other healthcare workers of palliative care needs in their patients with dementia, and other neurodegenerative disease? |