¶ Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes (NCT06645626)
ClinicalTrials.gov Identifier: NCT06645626
Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes (NCT06645626) is a comparative health services research study examining healthcare utilization, service delivery models, and quality of life outcomes for patients with Progressive Supranuclear Palsy (PSP), Corticobasal Syndrome (CBS), and Multiple System Atrophy (MSA).
This study addresses a critical gap in neurodegenerative disease research — understanding how healthcare systems can better serve patients with complex movement disorders that require multidisciplinary care, specialized expertise, and long-term support services.
| Field |
Value |
| NCT Number |
NCT06645626 |
| Status |
Recruiting |
| Study Type |
Observational / Health Services Research |
| Conditions |
PSP, CBS, MSA |
| Focus |
Healthcare delivery, quality of life |
| Enrollment |
600 participants (estimated) |
| Primary Completion |
December 2027 |
| Study Completion |
June 2028 |
| Sponsor |
University College London |
Atypical parkinsonian syndromes present unique challenges for patients, families, and healthcare systems:
- Complex care needs — Progressive disability requiring multidisciplinary care
- Limited specialist availability — Few centers have dedicated movement disorder expertise
- Variable service access — Geographic disparities in care quality
- High caregiver burden — Significant impact on family caregivers
- Rapid disease progression — Median survival 6-8 years (PSP), 6-10 years (MSA)
- Diagnostic delays: Average time from symptom onset to diagnosis is 3-4 years for PSP and CBS
- Fragmented care: Patients often see multiple specialists without coordination
- Limited access: Specialized movement disorder centers are concentrated in urban areas
- Inadequate support services: Speech therapy, physiotherapy, and occupational therapy underutilized
This study investigates how different healthcare delivery models affect outcomes.
- Compare healthcare utilization across regions with different service models
- Assess quality of life in patients with atypical parkinsonism
- Identify which aspects of specialist care provide most benefit
- Evaluate the impact of support services on patients and caregivers
- Determine influence of specialty clinics on disease management
- Identify barriers to optimal care delivery
- Develop evidence-based recommendations for healthcare policy
- Characterize caregiver burden and its relationship to care models
- Assess economic burden of atypical parkinsonian syndromes
- Identify biomarkers of disease progression that correlate with care utilization
The study compares:
- Regions with specialist clinics vs. regions without
- Different service delivery models within specialist regions
- Impact of multidisciplinary teams vs. standard care
| Model Type |
Description |
Examples |
| Comprehensive Care |
Multidisciplinary team with neurologists, therapists, social workers |
Specialist movement disorder centers |
| Coordinated Care |
Primary care with specialist referrals and care coordination |
Managed care systems |
| Standard Care |
General neurology with episodic specialist input |
Community hospitals |
| Telemedicine |
Remote specialist consultations with local care coordination |
Rural/underserved areas |
| Instrument |
Domain |
Frequency |
| PDQ-39 |
Quality of life |
Baseline, 6mo, 12mo |
| MoCA |
Cognition |
Baseline, 12mo |
| PHQ-9 |
Depression |
Baseline, 6mo, 12mo |
| Zarit Burden Interview |
Caregiver burden |
Baseline, 12mo |
- Hospital admissions (emergency and elective)
- Outpatient visits (specialist and primary care)
- Medication utilization
- Therapy sessions (physical, occupational, speech)
- Home health services
- Durable medical equipment
- Disease severity (MDS-UPDRS, PSP-RS, CBSI, UMSARS)
- Functional independence (Barthel Index)
- Falls and injuries
PSP exemplifies the challenges this study addresses:
Clinical Features:
- Progressive supranuclear gaze palsy: Vertical gaze limitation affecting daily activities
- Postural instability: Frequent falls, often resulting in injury
- Dysphagia: Difficulty swallowing, risk of aspiration
- Cognitive decline: Executive dysfunction, behavioral changes
- Pseudobulbar affect: Emotional lability
Disease Trajectory:
- Median time from onset to diagnosis: 3-4 years
- Median survival: 6-8 years from symptom onset
- Rapid functional decline in later stages
Healthcare Needs:
- Regular neurologist visits (every 3-6 months)
- Physiotherapy for balance and gait training
- Speech therapy for dysphagia and dysarthria
- Occupational therapy for activities of daily living
- Social work support for caregiver resources
Economic Impact:
- Annual healthcare costs: $20,000-40,000 per patient
- Informal caregiver burden: 15-20 hours/day in moderate stages
- Indirect costs: lost productivity, early retirement
| Model |
Potential Benefits |
Challenges |
Evidence |
| Specialized movement disorder centers |
Expert diagnosis, access to trials, multidisciplinary care |
Limited geographic access |
Strong evidence for PD |
| General neurology clinics |
Broader access, continuity |
Less expertise, delayed diagnosis |
Moderate evidence |
| Telemedicine |
Remote access to specialists |
Technology barriers, physical examination limits |
Emerging evidence |
| Community support services |
Social work, support groups, respite care |
Variable quality |
Weak evidence |
| Multidisciplinary teams |
Coordinated care, comprehensive assessment |
Resource intensive |
Strong evidence |
CBS presents unique healthcare challenges:
Core Features:
- Asymmetric parkinsonism with apraxia
- Cortical sensory loss
- Alien limb phenomenon
- Language impairment (in left hemisphere)
- Cognitive dysfunction (frontal/executive)
Care Needs:
- Neurorehabilitation services
- Assistive devices and home modifications
- Speech and language therapy
- Cognitive behavioral support
Quality of Life:
- Significant impact on activities of daily living
- High caregiver burden due to complex needs
- Depression and anxiety common in patients and caregivers
MSA has distinct healthcare requirements:
Core Features:
- Parkinsonism (MSA-P) or cerebellar ataxia (MSA-C)
- Autonomic dysfunction (orthostatic hypotension, urinary dysfunction)
- Rapid disease progression
Unique Care Needs:
- Autonomic management (fludrocortisone, midodrine)
- Urological management (catheterization, medication)
- Sleep disorder management (CPAP for sleep apnea)
- Falls prevention
Economic Impact:
- Higher healthcare costs than PD due to rapid progression
- Earlier institutionalization compared to other parkinsonisms
This research will provide evidence to:
- Identify most impactful services for each condition
- Determine optimal allocation of specialist vs. generalist care
- Inform workforce planning for movement disorder specialists
- Support specialist clinic development and funding
- Guide telemedicine implementation for rural areas
- Advocate for insurance coverage of multidisciplinary care
- Evidence-based care model recommendations
- Reduced diagnostic delays
- Better symptom management through optimized care pathways
- Identify support services with greatest impact
- Develop caregiver wellness programs
- Create respite care recommendations
Findings may inform:
- Development of specialized PSP care centers
- Integration of support services into standard care
- Telemedicine programs for remote areas
- Caregiver support program development
- Referral pathways to specialist services
- Care coordination protocols
- Patient and family education materials
- Outcome measurement frameworks
- Standardized healthcare utilization metrics
- Quality of life instruments validated for atypical parkinsonism
- Comparative effectiveness research methodologies
- Large sample size (600 participants) provides adequate power
- Multi-center design captures geographic variation
- Prospective design reduces recall bias
- Validated instruments ensure reliable measurement
- Observational design cannot establish causation
- Selection bias possible if patients with more severe disease decline participation
- Follow-up limited to 12 months
- Healthcare system differences may limit generalizability
- Comparison of healthcare utilization by care model type
- Quality of life correlates with care model characteristics
- Caregiver burden comparison across models
- Disease-specific subgroup analyses (PSP vs. CBS vs. MSA)
- Geographic variation in care delivery
- Predictors of high healthcare utilization
- Cost-effectiveness analysis of care models
- Budget impact modeling for health systems
- Informal care cost estimation
The study is actively recruiting participants across 15 sites in the UK, US, and Europe. Early enrollment data suggests strong interest from patients and caregivers, with over 200 participants enrolled as of February 2026.
Enrollment Milestones:
- October 2025: Study initiation
- February 2026: 200 participants enrolled
- Target: 600 participants by December 2026