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URMC / Center for Health + Technology / Our Expertise / CHeT Outcomes / PD-HI: The Parkinson’s Disease Health Index

 

PD-HI: The Parkinson’s Disease Health Index

  • Type of Clinical Outcome Assessment (COA): Patient-reported outcome measure (PRO)
  • Administration Mode: Self-administered
  • Therapeutic Area: Parkinson’s disease
  • Approximate Completion Time: <14 minutes
  • Required Supervision: None
  • Recall Period: Immediate point in time

Instrument Variations

  • The Parkinson’s Disease Health Index Short Form (PD-HI-SF)
    • PD-HI Short From Completion Time: Under 1 minute

Symptom Subscales

  • Number of Independently Validated Symptom Subscales: 13

Fatigue; Sleep & Daytime Sleepiness; Mobility & Ambulation; Activity Participation; Central Sensory Function; Pain; Gastrointestinal Function; Hand & Arm Function; Social Health; Emotional Health; Cognitive Function; Communication; Abnormal Movements

Instrument Attributes

  • The PD-HI is a patient-reported outcome (PRO) measure designed to assess symptoms and health-related quality-of-life from the perspective of patients with Parkinson’s disease.
  • Designed and validated to fully satisfy regulatory and published FDA guidance for use in drug-labeling claims and measuring changes in how a patient feels and functions.
  • The PD-HI is a fully valid, reliable, responsive, and disease-specific instrument capable of measuring changes in patient-reported health in patients with Parkinson’s disease.
  • The instrument was developed using extensive patient input, including an analysis of 2,978 patient quotes and a large cross-sectional study involving 404 patients.
  • The PD-HI is highly relevant to patients, has low patient burden, and correlates with markers of disease severity, and demonstrates low floor and no ceiling effects.
  • Utilized in industry, academic, and foundation sponsored clinical trials.
  • The PD-HI and its subscales demonstrated a high internal consistency (Cronbach α = 0.99 for the full instrument).
  • English

Additional translations available upon request.

Pending
  • “What Matters Most to Individuals with Parkinson’s Disease: Results from Qualitative Interviews.” A. Arky; C. Zizzi; E.R. Dorsey; C. Heatwole. Movement Disorder Society (MDS) Virtual Conference. 9/12/2020.
  • “The Parkinson’s Disease-Health Index: Development of a Novel, Disease Specific Patient-Reported Outcome Measure for Parkinson’s disease Clinical Trials.” J. Seabury, A. Arky, N. Dilek, E.R. Dorsey, Z. Rose, S. Rosero, A. Varma, J. Weinstein, C. Zizzi, C. Heatwole. Parkinson’s Study Group (PSG) Annual Meeting. Phoenix, AZ. 6/3/22.
  • “The Parkinson’s Disease-Health Index (PD-HI): Development and Validation of a Novel, Disease-Specific, Patient-Reported Outcome Measure”. J. Seabury, J. Weinstein, S. Rosero, A. Varma, C. Engebrecht, N. Dilek, J. Heatwole, M. McDermott, A. Arky, R. Dorsey, C. Zizzi, C. Heatwole. Oral session presented at: International Association of Parkinsonism and Related Disorders (IAPRD) XXVIII World Congress; May 13-16, 2023; Chicago, IL.
  • “Development and Validation of the Parkinson’s Disease-Health Index (PD-HI): A Disease-Specific, Patient-Reported Outcome Measure for Use in Clinical Trials.” J. Seabury, J. Weinstein, S. Rosero, A. Varma, C. Engebrecht, N. Dilek, J. Heatwole, M. McDermott, A. Arky, E.R. Dorsey, C. Zizzi, C. Heatwole. 6th World Parkinson Congress. Barcelona, Spain. 7/2023
  • “Development and Longitudinal Evaluation of the Parkinson’s Disease-Health Index: A Novel Patient-Reported Outcome Measure”. J. Seabury, J. Weinstein, A. Varma, S. Rosero, C. Engebrecht, S. Khosa, J. Heatwole, A. Arky, C. Zizzi, N. Dilek, J. Purks, J. Adams, R. Dorsey, C. Heatwole. Poster session presented at The Parkinson’s Study Group Meeting; November 29-December 3, 2023; Austin, TX.
  • “Longitudinal Evaluation of the Parkinson’s Disease-Health Index: a Novel, Disease-Specific Patient-Reported Outcome Measure”. J. Seabury, C. Engebrecht, J. Weinstein, A. Varma, S. Rosero, S. Khosa, C. Shupe, C. Irwin, J. Heatwole, A. Arky, C. Zizzi, N. Dilek, J. Purks, J. Adams, R. Dorsey, C. Heatwole. The American Academy of Neurology 76th Annual Meeting; April 13-18, 2024; Denver, CO.
  • “Longitudinal Evaluation of the Parkinson’s Disease-Health Index: a Novel, Disease-Specific Patient-Reported Outcome Measure.” C. Irwin, J. Seabury, C. Engebrecht, J. Weinstein, A. Varma, S. Rosero, C. Shupe, P. Kanagaiah, J. Heatwole, A. Arky, C. Zizzi, N. Dilek, J. Purks, J. Adams, R. Dorsey, C. Heatwole. Planning for Prevention of Parkinson’s a Trial Design Forum MGH; May 5-7, 2024; Boston, MA.
  • “The PD-HI: Development and Validation of a Novel, Disease-Specific Patient-Reported Outcome Measure for Parkinson’s Disease Clinical Trials.” J. Seabury, J. Weinstein, A. Varma, S. Rosero, C. Engebrecht, C. Irwin, C. Shupe, A. Arky, J. Heatwole, C. Zizzi, N. Dilek, J. Purks, J. Adams, R. Dorsey, C. Heatwole. World Congress on Parkinson’s and Related Disorders (IAPRD); May 19-22, 2024; Lisbon, Portugal.

Instrument Scoring

All subscales are scored on a scale of 0 to 100 with 0 representing no disease burden and 100 representing the maximum level of disease burden. Symptom questions within each subscale are weighted based on participant-reported prevalence and average impact as identified through the cross-sectional study. Subscale scores are also weighted to generate a total PD-HI score (0-100) representing overall disease burden.

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