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

Strand 1: Rapid Evidence Assessment (REA)

REA Findings Focus was on peer reviewed literature in English language from 2004-2016. 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.

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

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.

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

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

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?

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.

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