1. What existing research and data can tell us
Gary Witham
Lucy Webb
What existing research and data can tell us
#EOLC2018

2. Strand 1:
Rapid Evidence Assessment
(REA)

3. REA Findings
Focus was on peer reviewed literature in English language from
Dearth of evidence – none identifying effective interventions, responses, or practice models
Refocussed on broader scoping of available evidence, gaps, and implications for research and practice.
Total hits : n=4384
Final sample of 60 papers; 32 - empirical research.
Quality assessed and scored using DFID criteria
9 high quality, 18 moderate, 5 low.

4. REA Findings (cont.) Majority of papers were from North America
Only 9 papers from the UK
Two thirds were quantitative studies
25 papers focused on some aspect of pain management and prescribing practice for people with substance problems.
24 focused on homeless people and other marginalised groups (e.g. mental health, HIV)
6 papers focused on alcohol use among people with cancer diagnoses.
5 ‘others’ – diverse in methodology and focus, e.g. patterns of drug-related deaths, older drug users

5. Commonalities in the evidence
Common concerns included:
How to achieve safe and effective pain management.
Anxieties over ‘lifestyle’ factors and anticipated difficult behaviour.
Common recommendations relating to pain management and harm reduction strategies:
Screening tools and monitoring.
Acknowledgement of “chemical coping”.
Suggested provision for homeless people:
alcohol and care in shelter environments,
safety plans,
supervised drug consumption
advance directives.

6. Commonalities in the evidence (cont.)
Under-utilization of preventative or primary care services.
Over-utilization of emergency services.
Late identification of terminal diagnoses.
Need for empathic communication by professionals and flexible service responses.
Need for clinicians to ‘listen’
Need for flexible service response – case manager/case worker approach most useful

7. Gaps in the evidence UK-based research (n=9)
Limited evidence dominated by quantiative research
Lived experiences not well represented
No papers relating to family/carers’ experiences
8 papers included professionals’ perspectives
7 documented service users’ perspectives.
3 mentioned service users’ perspectives of family member’s involvement
Narrow topic focus of evidence
No intervention or evaluation studies
No consensus about good practice
No studies on NPS use
Only 3 studies exploring older drug users

8. Strand 2 scoping review of existing data key aims:
To identify existing evidence of need, access, prevalence and evidence
Is there a problem of service access or treatment difference for this population?
Is there existing stigma, prejudice or treatment challenges for these patients?
How much evidence is collected that enable monitoring of service delivery?

9. Method:
Desktop scoping – all accessible data ONS, HES, clinical audits, etc. EOL datasets and monitoring sites.
Substance use related mortality and morbidity.Specific clinical evidence (liver disease, cancers, HIV, etc).
Key Informants, published and grey literature.

10. Findings
Palliative care constructively excludes people with non-cancer liver disease
No evidence of stigma from staff attitudes
Constructed access barriers due to illness type – less predictable course of progression
Palliative care not set up to manage specific needs