Overview Summary of Project
Background and rationales:
Recognising that someone has deteriorating health can be a trigger for a change in their care plan, and potentially for advance care planning and introducing palliative care. While there are tools that can provide an objective measure of someone’s health status (for example scales designed to measure functional status), changes in a patient’s general appearance may be the first sign that their health is deteriorating. For example, people with white skin may look ‘grey’ or ‘sallow’ as their illness advances. For people with advanced and life-limiting illness, these subtle cues can be a trigger for health care professionals to discuss goals of care, the risks and benefits of further treatment, or to refer to specialist palliative care teams.
We know that people from minoritised ethnic groups are less likely to access specialist palliative care and more likely to have frequent Emergency Department visits towards the end of life, though the reasons for this are not clear. We also know that identification of a diverse range of skin signs (such as rashes, pressure damage) can be challenging among people of colour. If health professionals are less able to identify deteriorating health among people of colour, this could lead to higher rates of Emergency Department attendance near the end of life, or delay in referral to palliative care. Whether and how skin colour influences how health professionals make judgements about people’s health in advancing illness is unclear, but is a potential source of racial bias.
Research Questions:
1/ What are the skin changes that are used by health and care professionals as an indication that someone with advanced illnesses is deteriorating?
2/ How confident and competent are health and care professionals in identifying these skin changes in people of colour?
Method:
Two workstreams will occur in parallel.
WS1:
A rapid review will be undertaken to identify published evidence on (i) changes in skin and appearance that may indicate that someone with advanced illness is deteriorating, (ii) whether these changes are as readily identifiable among people of colour, and (iii) health and care professionals’ confidence in identifying these changes.
Using guidance on literature searching for rapid reviews from the Cochrane Rapid Reviews Methods Group, we will perform focused searches on MEDLINE and Embase databases via OVID and utilise citation searching of known relevant references to supplement.
Based on scoping searches, we anticipate that the rapid review will identify relatively little evidence. Therefore, in WS2 we will draw on health and care professionals’ experiential knowledge.
WS2
Expert consultations will be held with health and care professionals to explore their experience in using skin and appearance changes to identify deterioration in health for people with advanced illnesses.
At least two expert consultations will be held online, each lasting 90-120 minutes, and each including 6-10 health and care professionals who regularly care for people with advanced illness. Professional groups will include GPs, geriatricians, community nurses, care home professionals and specialist palliative care professionals.
One expert consultation will be for professionals who practice in the UK, selecting those who practice in areas with high levels of ethnic diversity. Another will be for professionals who practice outside the UK in countries where the majority of the population are people of colour. A facilitated conversation will explore professionals’ experience in identifying deteriorating health in people who have advanced illness, their confidence to identify these changes, and whether there are differences for people of colour. Findings from the rapid review will be used to guide questions.
PPI:
We will convene a group of patients and public members who represent diverse ethnicities to guide the research, meeting with them regularly to discuss the research questions and emerging findings. As part of WS2 we will invite PPI members to observe (with their cameras off) the expert consultations and feed back their reflections about the discussions to the research team, to guide interpretation.
In the expert consultations, we will aim to explore:
1/ health and the professionals’ experience in identifying changes in skin that may indicate that someone with an advanced illness is deteriorating;
2/ whether these changes are as readily identifiable among people of colour; and
3/ health and care professionals’ confidence and competence in identifying these changes among people of all skin tones
Eligibility of taking part in the online expert consultation includes all of the following (for UK-based professionals):
1/ Health and care professionals who regularly care for adults with advanced illnesses
2/ GPs, geriatricians, community nurses, care home professionals, paramedics, or specialist palliative care professionals
3/ practice in the UK and in areas with high levels of ethnic diversity
The online expert consultation meeting will last 90 minutes and involve 6-10 health and care professionals who regularly care for adults with advanced illnesses. We are planning to hold the consultation for health and care professionals based in the UK on Thursday, 13 February 2025, 11.00-12.30 (GMT) on Microsoft Teams.
