Which factors influence the end of life experience in PD?
Research type
Research Study
Full title
A study to determine which factors influence the quality of the end of life experience for people with Parkinson's disease and Parkinson's plus syndromes in Northumbria.
IRAS ID
155726
Contact name
Claire Morris
Contact email
Sponsor organisation
Northumbria Healthcare NHS FoundationTrust
Duration of Study in the UK
1 years, 11 months, 31 days
Research summary
This study aims to establish what influences the quality of the last months of life for a person with Parkinson’s disease (PD) or Parkinson’s plus syndromes (Progressive Supranuclear Palsy [PSP] and Multi-System Atrophy [MSA]). These are progressive neurodegenerative diseases that are currently incurable, therefore trying to find areas we can target to improve the end of life experience is crucial. We want to see whether the place that a person dies, or has their last few months, is influential, which symptoms have the most impact and whether PD medications are still helpful during the last days of life. As more personalized end of life care plans are coming into force, establishing what influences the end of life experience for people with PD and Parkinson's plus syndromes may help tailor better plans for others with the same conditions by giving them more information to make choices.
This will be a qualitative study using a mixture of semi-structured interviews with bereaved carers and closed internet forums. As the two parts will run concurrently they will influence each other, with factors raised in interviews being fed into the forums and issues raised on the forums being raised in interviews, if relevant. The place that the person who died spent their last few months of life will be a large component of the study. National surveys currently compare quality of the last three months of life in a person’s own home, hospital, care home or hospice and these are the settings we will aim to cover using purposive sampling. Most people want to die at home but only nine percent of people with Parkinson’s disease die in their own homes; this study should allow us to explore why this might be further.REC name
North East - Newcastle & North Tyneside 1 Research Ethics Committee
REC reference
15/NE/0066
Date of REC Opinion
31 Mar 2015
REC opinion
Further Information Favourable Opinion