The study will compare health care utilisation and quality of life for patients with progressive supranuclear palsy, corticobasal syndrome and multiple system atrophy in different parts of the region that our specialist clinic operates in with different services as well as in other regions with no specialist clinics. This study aims to investigate which aspects of the service are most beneficial for the patients and to determine the influence of support services and specialty clinics on patients and their carers.
Be aged 18 or over
Have capacity to consent at the beginning of their involvement
Have a diagnosis of a neurodegenerative disease which includes progressive supranuclear palsy, corticobasal syndrome and multiple system atrophy but may include other closely related diseases where the presentation is similar, such as Alzheimer's disease where they present with a corticobasal syndrome
Patients or carers not meeting the inclusion criteria
Patients with static deficits only who do not have a neurodegenerative syndrome.
Patients who the principal investigator feels are not suitable to take part due to co-morbidities or participation in other trials.
Patients attending the Wessex Atypical Parkinsonian syndrome clinic. Patients not attending the Wessex Atypical Parkinsonian syndrome clinic or any movement disorder specialist clinic in the UK.
Cohort
Prospective
Not listed
Change in Quality of life score
Quality of life assessments using disease specific measures: the progressive supranuclear syndrome quality of life scale (Minimum score 0 and Max (worst) score is 180), Multiple system atrophy quality of life scale (minimum (best) score 0 and maximum score (worst) 160) and generic scales: the EQ5D5L (minimum (best) 0 and maximum (worst) 20) for patients and carers.
Change in health utilisation cost
Cost to the health service using the Resource utilisation in Dementia scale.
Time to disease milestones
Time between onset of symptoms to assistance with walking, use of wheelchair, urinary catheter, nursing home and death. Better outcomes would be delayed time to disease milestones.
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