Priority 10 from the Palliative and end of life care PSP

UNCERTAINTY:  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?   (JLA PSP Priority 10)
Overall ranking 10
JLA question ID 0026/10

Pieper MJ, van Dalen?Kok AH, Francke AL, van der Steen JT, Scherder EJ, Husebo BS, Achterberg WP. Interventions targeting pain or behaviour in dementia: a systematic review. Ageing Research Reviews.2013;12(4):1042?1055 PMID: 23727161

Hall S, Kolliakou A, Petkova H, Froggatt K, Higginson IJ. Interventions for improving palliative care for older people living in nursing care homes. Cochrane Database of Systematic Reviews 2011, Issue 3. Art. No.: CD007132. DOI: 10.1002/14651858.CD007132.pub2.

Ongoing trials: Implementation of improved diagnosis and treatment of pain and depression in demented elderly  Pain Management and Behavioral Outcomes in Patients With Dementia NCT00012857  Pain Perception in Alzheimer's Disease NCT00192816.

Health Research Classification System category  Generic
Extra information provided by this PSP
Original uncertainty examples How to tell when someone in the very end stages of dementia is in pain and or distress.  ~   How good is pain relief when the person suffering is no longer able to communicate verbally?  ~  I realise pain can be subjective, but it would be worth looking to develop better pain tools for those who are unable to communicate (either due to level of consciousness, impact of drugs, or due to the condition such as MND or stroke).
Submitted by Professionals x 2  ~  Carers x 2  ~  Bereaved carers x 5  ~  Members of the Public x 1  ~  Patients x 1
Outcomes to be measured Health related quality of life, good death, Change in symptoms or change in management of symptoms, adverse effects or complications
PSP information
PSP unique ID 0026
PSP name Palliative and end of life care
Total number of uncertainties identified by this PSP. 83  (To see a full list of all uncertainties identified, please see the detailed spreadsheet held on the JLA website)
Date of priority setting workshop 21 November 2014