Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes

NCT06645626 | Recruiting

• 1 other identifier: NEU0416
• Study Type: observational
• Target: 198
• Locations: 1 country
• Sites: 1

Brief Summary

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.

Conditions

Progressive Supranuclear Palsy; Cortico Basal Degeneration; Multiple System Atrophy

Keywords

quality of life; health economics

Outcome Measures

Primary Outcomes (2)

• 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 quality of life score from enrolment to 12 months of participation

• Change in health utilisation cost

  Cost to the health service using the Resource utilisation in Dementia scale.

  Change in health utilisation cost from enrolment to 12 months of participation

Secondary Outcomes (1)

• Time to disease milestones

  Assessment of patients function from baseline at the time of enrolment to 12 months of participation

Study Arms (2)

UHS Specialist Clinic population

All patients seen in regional clinic with this diagnosis

Interested patients from non-specialty clinics around the country.

Interested patients who meet the inclusion criteria and are from any region in the country with no movement disorder specialist clinic.

Eligibility Criteria

• Age: 18 Years+
• Sex: all
• Healthy Volunteers: No
• Age Groups: Adult (18-64), Older Adult (65+)
• Sampling Method: Non-Probability Sample

Study Population

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.

You may qualify if:

• Patients and their carers must:
• 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

You may not qualify if:

• 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.

Sponsors & Collaborators

• University Hospital Southampton NHS Foundation Trust: lead

Study Sites (1)

Wessex Neurological Centre

Southampton, Hampshire, SO16 6YD, United Kingdom

RECRUITING

MeSH Terms

Conditions

Supranuclear Palsy, Progressive; Corticobasal Degeneration; Multiple System Atrophy

Condition Hierarchy (Ancestors)

Basal Ganglia Diseases; Brain Diseases; Central Nervous System Diseases; Nervous System Diseases; Movement Disorders; Ophthalmoplegia; Ocular Motility Disorders; Cranial Nerve Diseases; Tauopathies; Neurodegenerative Diseases; Paralysis; Neurologic Manifestations; Eye Diseases; Signs and Symptoms; Pathological Conditions, Signs and Symptoms; Primary Dysautonomias; Autonomic Nervous System Diseases; Synucleinopathies

Study Officials

• Boyd CP Ghosh, MBBS

  Wessex Neurological Centre

  PRINCIPAL INVESTIGATOR

Central Study Contacts

Trial administrator Neurodegenerative research team

CONTACT

0044 2381206132; srikanth.anugu@uhs.nhs.uk

Study Design

• Study Type: observational
• Observational Model: COHORT
• Time Perspective: PROSPECTIVE
• Sponsor Type: OTHER
• Responsible Party: SPONSOR

Study Record Dates

• First Submitted: September 30, 2022
• First Posted: October 17, 2024
• Study Start: October 10, 2022
• Primary Completion (Estimated): August 31, 2026
• Study Completion (Estimated): July 15, 2027
• Last Updated: October 17, 2024

Record last verified: 2024-10

Data Sharing

• IPD Sharing: Will not share

Locations

GB (1)