Palliative care and advance care planning in MND place of death
Research type
Research Study
Full title
How does advance care planning and palliative care input affect the place of death of motor neurone disease patients in the West of Scotland?
IRAS ID
276850
Contact name
George Gorrie
Contact email
Sponsor organisation
NHS GG&C
Duration of Study in the UK
0 years, 11 months, 30 days
Research summary
This project will test the following hypotheses:\n\n1: When advance care planning takes place with MND patients they are more likely to die outside of hospital (i.e. home, care home, hospice) 2: Palliative care input is positively associated with preferred place of death and actual place of death being identical.\n\nA retrospective cohort analysis over a three-year period will be performed on MND patients from the West of Scotland diagnosed between January 1st 2015 and December 31st 2017. The following data will be requested from the Scottish Clinical Audit Research and Evaluation for MND (CARE-MND) register, which recruits patients with informed consent:\n\nCommunity Health Index (CHI) number, sex, date of diagnosis, date of symptom onset, type of MND, Edinburgh Cognitive and Behavioural ALS Screen (ECAS) total, postcode (for deprivation analysis), non-invasive ventilation status, gastrostomy status, date of death, cause of death, and place of death. Only data from deceased patients who have consented to their data being stored on CARE-MND for research purposes will be requested.\n\nElectronic case records (Clinical Portal) will be analysed to determine whether advance care planning has taken place and who performed this, as well as whether a palliative care team has been involved. Preferred place of death will be identified from case records and Key Information Summaries, as well as DNA-CPR status. Local hospice records will also be utilised to verify palliative care input status.\n\nAssociations will be tested using univariate testing in addition to multivariate analysis to identify if patients who have advance care planning/input from palliative care services are more likely to die outside of hospital/in their preferred place of death.
REC name
Yorkshire & The Humber - Leeds West Research Ethics Committee
REC reference
20/YH/0141
Date of REC Opinion
17 Apr 2020
REC opinion
Favourable Opinion