Quality of life and palliative care need in MSA and PSP
Research type
Research Study
Full title
Disease Progression and Factors which may Influence Quality of Life and Need for Palliative Care in Patients and Carers in MSA and PSP; a single centre pilot study using quantitative and qualitative methods
IRAS ID
186378
Contact name
David Burn
Contact email
Sponsor organisation
Newcastle upon Tyne Hospitals NHS Foundation
Duration of Study in the UK
1 years, 9 months, 2 days
Research summary
This study looks at two distinct neurodegenerative conditions Progressive Supranuclear Palsy (PSP) and Multiple System Atrophy (MSA). PSP is a syndrome of rigidity with early-onset falls and gait problems, often with cognitive issues. MSA can present in a number of ways but often has problems with the autonomic nervous system, causing problems with blood pressure control, urinary problems and breathing.
These conditions are considered together as ‘atypical Parkinsonism' - being Parkinson's disease-like but with atypical features, having rapid progression and reduced survival with a heavy symptom burden.
The primary outcome will be to find associations between disease severity (measured using rating scales) in MSA and PSP and quality of life and perceived palliative care need. There may be key clinical milestones which are associated with lower quality of life or greater palliative care requirement. Qualitative analysis will be used to explore patient and carer experience.
Disease-specific and generic scales to assess quality of life and palliative care need will be taken along with an assessment of disease severity (key symptoms which are present referred to as 'clinical milestones') .This will help show the any association between disease severity and quality of life and need for palliative care, and whether certain symptoms have particular impact upon quality of life and need for palliative care.
Carers of patients will be given scales looking at stress, care-giver strain specifically for carers of people with a Parkinson's-like disorder and a generic quality of life score.
Semi-structured interviews will be conducted with both patient and carer separately and analysed thematically, exploring perspectives and attitudes to palliative care.
The research will talk place in a single centre, specialist research-clinic setting. The research will be conducted over a 2 year period.
REC name
Yorkshire & The Humber - Bradford Leeds Research Ethics Committee
REC reference
15/YH/0459
Date of REC Opinion
12 Oct 2015
REC opinion
Favourable Opinion