People with learning disabilities, also known as intellectual disabilities, have a shorter life expectancy than most other people. It is important that they are supported properly when they reach the end of their lives. However, health professionals, like doctors and nurses, find it hard to recognise when they need end-of-life care. This means that they may not get the care and support that they need. NHS England has recently set out some plans to improve end-of-life care for everyone. They stressed that people with learning disabilities should not be overlooked.
We will look at end-of-life care for adults, aged 18 years or over, with learning disabilities who visit the GP and hospital. People who are approaching the end of their lives are flagged by their GP who might place them on a special register (‘end-of-life care register’) or simply label them as needing end-of-life care (‘end-of-life care record’). In our study, we will compare people with and without learning disabilities. We will look at:
1. The characteristics of people who are on the end-of-life care register or have an end-of-life care record
2. How long people survive after having an end-of-life care record
3. People who die but are not registered as being at the end of their lives
4. How many hospital visits and consultations people have at the end of their lives
5. How many referrals there are to health specialists who provide end-of-life care
We will make recommendations to improve end-of-life care for people with learning disabilities.
People with learning disabilities are known to experience significant health inequalities and inequities compared with most other people, including shorter life expectancy and poorer healthcare provision. Among them, they experience inequities in end-of-life care, often because healthcare professionals can fail to recognise when they are approaching the end of their lives owing to communication difficulties, diagnostic overshadowing (attributing all symptoms to the learning disability), and lack of training. Nonetheless, it is crucial that they are supported properly in accordance with NHS England’s policy ambitions.
This retrospective cohort study of Clinical Practice Research Datalink (CPRD) data, linked with hospital, mortality and deprivation data in England will map palliative and end-life-care trajectories of adults (≥18 years) with learning disabilities and compare these in adults without learning disabilities. We will:
1. Investigate differences (by learning disability status) in the GP recording of generic end-of-life care and end-of-life care registration (see Appendix 2)
2. Investigate differences in survival time after GP recording and registration of end-of-life care
3. Compare the characteristics of people who die while registered at the GP surgery, but are not recorded as being at the end of their lives
4. Investigate the pattern of healthcare utilisation after GP recording of end-of-life care, as measured by the number of primary care consultations and secondary care episodes
5. Compare differences in referrals to palliative care specialists
Statistical analyses will combine age-standardised differences between proportions [objectives 1,2,5] and time-to-event analyses (Poisson [objective 4], flexible parametric methods/Cox models [objectives 2]). Our findings will provide evidence for existing policy ambitions and make recommendations on how these can be achieved. Ultimately, we hope to improve the quality of care and reduce health inequalities for adults with learning disabilities at a very challenging time for themselves and their family members.
Survival;
Recording and registration (i.e. end-of-life care register) of palliative and end-of-life care need (see Appendix 2);
Number of consultations;
Number of hospitalisations;
Health professional seen;
Referrals to specialist palliative care services (see Appendix 3)
Causes of death;
Place of death
Freya Tyrer - Chief Investigator - University of Leicester
Freya Tyrer - Corresponding Applicant - University of Leicester
Clare Gillies - Collaborator - University of Leicester
Francesco Zaccardi - Collaborator - University of Leicester
Joanne Miksza - Collaborator - University of Leicester
HES Admitted Patient Care;ONS Death Registration Data;Patient Level Index of Multiple Deprivation