Utilisation of Health Services and Quality of Life in Atypical Parkinsonian Syndromes (NCT06645626)

Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes (NCT06645626)

ClinicalTrials.gov Identifier: [NCT06645626](https://clinicaltrials.gov/study/NCT06645626)

Overview

Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes (NCT06645626)

ClinicalTrials.gov Identifier: [NCT06645626](https://clinicaltrials.gov/study/NCT06645626)

Overview

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)[@clinicaltrialsgov2026].

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.

Trial Details

| 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 |

Study Rationale

Disease Burden Overview

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)[@pspnaturalhistory]

Healthcare System Challenges

This study investigates how different healthcare delivery models affect outcomes[@clinicaltrialsgov2026].

Study Objectives

Primary Objectives

Secondary Objectives

Exploratory Objectives

• 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

Study Design

Comparison Framework

The study compares:

• Regions with specialist clinics vs. regions without
• Different service delivery models within specialist regions
• Impact of multidisciplinary teams vs. standard care

Study Arms

| 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 |

Data Collection

Patient-Reported Outcomes

Healthcare Utilization Metrics

• Hospital admissions (emergency and elective)
• Outpatient visits (specialist and primary care)
• Medication utilization
• Therapy sessions (physical, occupational, speech)
• Home health services
• Durable medical equipment

Clinical Measures

• Disease severity (MDS-UPDRS, PSP-RS, CBSI, UMSARS)
• Functional independence (Barthel Index)
• Falls and injuries

Relevance to PSP

Disease Burden in PSP

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

• Median time from onset to diagnosis: 3-4 years[@pspnaturalhistory]
• Median survival: 6-8 years from symptom onset
• Rapid functional decline in later stages

• 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

• 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

Healthcare Delivery Models

| Model | Potential Benefits | Challenges | Evidence |
|-----------|----------------------|---------------|---------------|
| Specialized movement disorder centers | Expert diagnosis, access to trials, multidisciplinary care | Limited geographic access | Strong evidence for PD[@healthcaremodels] |
| 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 |

Relevance to CBS

Corticobasal Syndrome Burden

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)

• Neurorehabilitation services
• Assistive devices and home modifications
• Speech and language therapy
• Cognitive behavioral support

• Significant impact on activities of daily living
• High caregiver burden due to complex needs[@cbsburden]
• Depression and anxiety common in patients and caregivers

Relevance to MSA

Multiple System Atrophy Burden

MSA has distinct healthcare requirements:

Core Features:

• Parkinsonism (MSA-P) or cerebellar ataxia (MSA-C)
• Autonomic dysfunction (orthostatic hypotension, urinary dysfunction)
• Rapid disease progression

• Autonomic management (fludrocortisone, midodrine)
• Urological management (catheterization, medication)
• Sleep disorder management (CPAP for sleep apnea)
• Falls prevention

• Higher healthcare costs than PD due to rapid progression[@msaeconomic]
• Earlier institutionalization compared to other parkinsonisms

Expected Findings

This research will provide evidence to:

1. Guide Resource Allocation

• Identify most impactful services for each condition
• Determine optimal allocation of specialist vs. generalist care
• Inform workforce planning for movement disorder specialists

2. Inform Healthcare Policy

• Support specialist clinic development and funding
• Guide telemedicine implementation for rural areas
• Advocate for insurance coverage of multidisciplinary care

3. Improve Patient Outcomes

• Evidence-based care model recommendations
• Reduced diagnostic delays
• Better symptom management through optimized care pathways

4. Support Caregivers

• Identify support services with greatest impact
• Develop caregiver wellness programs
• Create respite care recommendations

Implications for Clinical Practice

Findings may inform:

For Healthcare Systems

• Development of specialized PSP care centers
• Integration of support services into standard care
• Telemedicine programs for remote areas
• Caregiver support program development

For Clinicians

• Referral pathways to specialist services
• Care coordination protocols
• Patient and family education materials
• Outcome measurement frameworks

For Researchers

• Standardized healthcare utilization metrics
• Quality of life instruments validated for atypical parkinsonism
• Comparative effectiveness research methodologies

Methodology Considerations

Strengths

• Large sample size (600 participants) provides adequate power
• Multi-center design captures geographic variation
• Prospective design reduces recall bias
• Validated instruments ensure reliable measurement

Limitations

• 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

Data Analysis Plan

Primary Analyses

Secondary Analyses

Health Economics

• Cost-effectiveness analysis of care models
• Budget impact modeling for health systems
• Informal care cost estimation

Current Status (March 2026)

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

Cross-References

• [Progressive Supranuclear Palsy](/diseases/progressive-supranuclear-psp) — Disease overview
• [Corticobasal Syndrome](/diseases/corticobasal-syndrome) — CBS disease page
• [Multiple System Atrophy](/diseases/multiple-system-atrophy) — MSA disease page
• [Atypical Parkinsonism Treatment Plan](/therapeutics/personalized-treatment-plan-atypical-parkinsonism) — Treatment hub](/therapeutics)
• [Movement Disorder Centers](/institutions/movement-disorder-centers) — Specialist care

References

Deep Dive: Comparative Healthcare Models

Academic Medical Center Model

Academic movement disorder centers represent the gold standard for complex neurodegenerative disorders, offering comprehensive services that typically include:

Core Components:

• Board-certified movement disorder neurologists with fellowship training
• Multidisciplinary teams including physical therapists, occupational therapists, speech-language pathologists, and social workers
• Advanced diagnostic capabilities including neuroimaging, neurophysiology, and biomarker testing
• Access to cutting-edge clinical trials and experimental therapies
• Training programs for future neurologists and researchers

• Accurate diagnosis through specialized expertise (crucial for distinguishing PSP from PD and CBS)
• Comprehensive assessment addressing motor, cognitive, speech, and autonomic symptoms
• Coordinated care with regular team conferences
• Access to experimental therapies through clinical trials
• Research contribution to understanding these rare conditions

• Geographic concentration in major metropolitan areas creates access barriers
• Long wait times for new patient appointments (often 3-6 months)
• Often perceived as impersonal due to high patient volumes and trainee involvement
• Higher costs compared to community-based care
• May require significant travel for patients in rural areas

Community Neurology Model

Most patients with atypical parkinsonism receive care from general neurologists in community settings:

Characteristics:

• General neurologists without movement disorder subspecialty training
• Limited multidisciplinary resources (often referral-based)
• Variable access to rehabilitation services
• Strong continuity of care with established patient relationships

• Convenient geographic access in most communities
• Shorter wait times for appointments
• Strong doctor-patient relationships built over years
• Lower costs compared to academic centers
• More time available per patient in many cases

• Limited experience with rare conditions like PSP, CBS, MSA
• Delayed diagnosis due to lack of familiarity with presentations
• Less access to latest treatment advances and clinical trials
• Fragmented care when referrals to specialists are needed
• May not recognize complications requiring urgent attention

Telemedicine-Enhanced Care

Remote care delivery has expanded dramatically, particularly following the COVID-19 pandemic:

Technology Platforms:

• Video consultations for real-time assessment
• Remote monitoring devices for tracking symptoms
• Store-and-forward for sharing medical records and images
• Mobile applications for symptom tracking and communication

• Initial consultation for diagnosis confirmation
• Routine follow-up visits for medication management
• Caregiver education and support sessions
• Access to specialists for patients in remote areas
• Post-discharge follow-up after hospitalizations

• Telemedicine in Parkinson's disease has shown high patient satisfaction
• Comparable clinical outcomes to in-person visits for appropriate indications
• Cost-effective alternative to reduce travel burden
• Limitations include inability to perform detailed motor examinations

• Technology barriers for elderly patients
• Internet access limitations in rural areas
• Reimbursement policies vary by jurisdiction
• Privacy and security requirements
• Limited ability to assess subtle neurological findings

Integrated Care Models

Patient-centered medical homes and coordinated care models aim to address fragmentation:

Key Elements:

• Designated care coordinator or navigator
• Shared care plans accessible to all providers
• Regular communication between team members
• Focus on patient goals and preferences
• Proactive outreach and care management

• Diabetes: Integrated care models improve outcomes and reduce costs
• Heart failure: Case management reduces hospitalizations
• COPD: Coordinated care improves quality of life

• Reduces fragmentation between neurologist, therapist, and social work
• Ensures timely screening for complications (dysphagia, falls, depression)
• Supports caregiver wellness through anticipatory guidance
• May reduce emergency hospitalizations through better routine care

Economic Analysis Deep Dive

Direct Healthcare Costs

Patients with atypical parkinsonism incur substantial healthcare costs:

Medication Costs:

• Standard parkinsonian medications (levodopa, dopamine agonists)
• Management of complications (antidepressants, antipsychotics)
• Autonomic medications (fludrocortisone, midodrine for MSA)
• Average annual medication costs: $3,000-8,000

• Neurology visits: 4-6 per year at $200-400 per visit
• Physical therapy: 20-40 sessions per year
• Occupational therapy: 10-20 sessions per year
• Speech therapy: 20-40 sessions per year for dysphagia
• Annual outpatient costs: $10,000-25,000

• Falls and injuries requiring emergency care
• Aspiration pneumonia treatment
• Urinary tract infections
• Average cost per hospitalization: $15,000-30,000
• Annual hospitalization costs: variable but significant

Indirect and Societal Costs

Beyond direct medical expenses, atypical parkinsonism imposes substantial indirect costs:

Informal Caregiving:

• Unpaid family caregivers provide 10-25 hours per week of care
• Value of caregiving: $50,000-100,000 annually per patient
• Caregiver lost wages and retirement benefits

• Patient's own work reduction or cessation
• Caregiver work adjustments
• Estimated $20,000-40,000 annually in lost productivity

• Disability benefits
• Long-term care placement
• Home modifications and equipment

Cost-Effectiveness of Care Models

Understanding which models provide best value is a key study objective:

Specialized Centers:

• Higher upfront costs but potentially better outcomes
• May reduce expensive complications through better management
• Clinical trial access provides experimental treatments at no cost

• Lower costs compared to in-person visits
• Reduces travel burden for patients
• Enables more frequent follow-up

• Care coordination costs are offset by reduced hospitalizations
• Early identification of complications prevents emergency care
• Better medication adherence improves outcomes

Policy Implications

Healthcare System Design

This research will inform how healthcare systems organize care for rare neurodegenerative conditions:

Workforce Planning:

• How many movement disorder specialists are needed?
• What is the appropriate balance of specialists vs. generalists?
• How should telemedicine be integrated into workforce models?

• Where should specialized centers be located?
• How should rehabilitation services be distributed?
• What support services are essential vs. optional?

• What metrics should be tracked for atypical parkinsonism care?
• How should care models be evaluated?
• What accreditation standards are appropriate?

Reimbursement Considerations

Payment models significantly influence care delivery:

Fee-for-Service:

• Current model incentivizes volume over value
• Fragmented payments don't support care coordination
• Inadequate reimbursement for telemedicine

• Bundled payments for episodes of care
• Capitation with quality metrics
• Shared savings for reduced complications

• Reimburse multidisciplinary care teams adequately
• Support care coordination activities
• Expand telemedicine coverage
• Recognize caregiver support as essential

Research Funding Priorities

The study will identify gaps in knowledge requiring further research:

Methodological Priorities:

• Validated quality measures for atypical parkinsonism
• Standardized healthcare utilization metrics
• Patient-centered outcome measures
• Cost-effectiveness methodologies

• Optimal timing of specialist referral
• Components of comprehensive care
• Role of telehealth in ongoing management
• Caregiver support interventions

Future Directions

Building on Study Findings

Regardless of specific results, this research will advance the field:

If Specialist Care Shows Superior Outcomes:

• Advocate for increased specialist availability
• Develop models for disseminating expertise
• Create telemedicine networks for underserved areas
• Support training programs for movement disorder specialists

• Focus on improving generalist capabilities
• Develop decision support tools for diagnosis
• Enhance referral pathways to specialists when needed
• Support shared care models

• Consider cost-effectiveness tradeoffs
• Emphasize patient preference and access
• Focus on specific components of care that matter most
• Examine subgroups who may benefit from different approaches

Integration with Broader Initiatives

This research connects to larger efforts in neuroscience healthcare:

Rare Disease Research:

• Models for other rare neurological conditions
• Standardized approaches to healthcare delivery research
• Patient registry integration

• Continuous quality improvement
• Evidence-based practice implementation
• Real-world data utilization

• Shared decision-making frameworks
• Goal-concordant care approaches
• Family-centered outcomes

Conclusion

The Utilisation of Health Services and Quality of Life in Patients With Atypical Parkinsonian Syndromes study addresses a critical gap in our understanding of healthcare delivery for patients with PSP, CBS, and MSA. By examining how different service models affect patient outcomes, this research will inform efforts to improve care for these devastating conditions.

For patients and families affected by atypical parkinsonism, understanding the healthcare landscape is essential for navigating a complex system. The study provides evidence that will help patients and providers make informed decisions about care options.

For healthcare systems and policymakers, evidence on what works is essential for efficient resource allocation. Understanding the value proposition of different care models enables smarter investments in healthcare delivery.

For researchers, this study provides a foundation for future quality improvement and comparative effectiveness research. The methodologies and metrics developed here can be applied to other rare neurological conditions.

The findings from this study will contribute to evidence-based care for atypical parkinsonian syndromes, ultimately improving quality of life for patients and their families facing these challenging diagnoses.