Mapping existing guidance/pathways and identification of outcome measures for end of life care in dementia
Deliverables:
[1] Summary of existing recommendations and examples of UK best practice including the quality of the evidence base underpinning them
[2] Summary of person-centred indicators/outcomes to measure good quality end of life care
[3] Identification of resource implications/benefits of existing pathways to inform subsequent modelling in WS5
Progress on Workstream 1 (October 2016)
Deliverable [1] & [3]
The review of guidance in end-of-life care in dementia is complete; (i.e. deliverable [1]); this built on a recent systematic review (2015) of dementia care guidelines. Five dementia care guidelines addressed issues related to palliative care and scored four or higher on the AGREE II instrument:
In order to meet deliverable [3] we assessed key components and content of guidelines/care pathways (i.e. setting, content and timing of each pathway, care model or guideline, who ‘leads’ it, staff/resource implications and how adherence and variance are documented) in cooperation with WS5 leads. Overall, guidelines outline the type of resourcing required rather than the quantity of the resource use that is needed (e.g. how much of a care workers time). This work will inform health economics WS5.
The survey of palliative care services in dementia is complete. An online survey was developed based on the NCPC’s 2008 survey tool and results, and consisted of five sections covering (i) general information regarding the service (i.e. title, contact information and location), (ii) service activities and referral criteria, (iii) team size and composition, (iv) situation, funding mechanisms, sectors of operation, as well as (v) dissemination and evaluation activities. The survey ran from October 2014 to February 2015. The survey was developed using OPINIO, a web-based tool which provides a framework for authoring and distributing surveys.
Sustainability of services appears to be attributable to funding mechanisms (i.e., services that are commissioned or part of normal service Trust provision appear to have greater sustainability), and being led by a practitioner recognised within the end of life in dementia practice or research community. The paper is now in press in BMJ Supportive and Palliative Care:
Amador S, Goodman C, Robinson L & Sampson EL. UK end-of-life care services in dementia, initiatives and sustainability: results of a national online survey.
Deliverable [2]
WS 1.2 has been completed. We updated a recent systematic review of quality indicators for palliative care containing a total of 326 indicators. These indicators have been summarised as a function of where they fit along the dementia trajectory (e.g. for PWD at home or in LTCs; at the last year or last 3 days of life).
A paper “ Quality indicators for palliative care: How useful are they for the assessment of end-of-life care in dementia?” is in preparation for submisson to the journal "Palliative Medicine".