AMN-HI: The Adrenomyeloneuropathy Health Index
AMN-HI: The Adrenomyeloneuropathy Health Index
- Type of Clinical Outcome Assessment (COA): Patient-reported outcome measure (PRO)
- Administration Mode: Self-administered
- Therapeutic Area: Adrenomyeloneuropathy
- Approximate Completion Time: <9 minutes
- Required Supervision: None
- Recall Period: Immediate point in time
Instrument Variations
- The Adrenomyeloneuropathy Health Index Short Form (AMN-HI-SF)
- AMN Short From Completion Time: Under 1 minute
Symptom Subscales
- Number of Independently Validated Symptom Subscales: 15
Mobility & Ambulation; Balance; Activity Participation; Pain; Fatigue; Bladder Function; Bowel Function; Social Satisfaction; Emotional Health; Sleep & Daytime Sleepiness; Back, Chest & Abdominal Strength; Shoulder & Arm Function; Sensory Function; Involuntary Movements; Hand & Finger Function
Instrument Attributes
- The AMN-HI is a patient-reported outcome (PRO) measure designed to assess symptoms and health-related quality-of-life from the perspective of patients with adrenomyeloneuropathy.
- 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 AMN-HI is a fully valid, reliable, responsive, and disease-specific instrument capable of measuring changes in patient-reported health in patients with adrenomyeloneuropathy.
- The instrument was developed using extensive patient input, including an analysis of 1,709 patient quotes and a large cross-sectional study involving 109 patients.
- The AMN-HI is highly relevant to patients, has low patient burden, correlates with markers of disease severity, and demonstrates no floor or ceiling effects.
- Utilized in industry studies.
- The AMN-HI and its subscales demonstrated a high internal consistency (Cronbach α = 0.98 for the full instrument).
- English
Additional translations available upon request.
- Varma, A., Weinstein, J., Seabury, J. et al. Patient-reported impact of symptoms in adrenoleukodystrophy (PRISM-ALD). Orphanet J Rare Dis 19, 127 (2024). https://doi.org/10.1186/s13023-024-03129-6
- “Development and Validation of Disease-Specific Patient-Reported Outcome Measure for Patients with Adrenoleukodystrophy & Adrenomyeloneuropathy”. J. Weinstein, A. Varma, C. Engebrecht, J. Seabury, S. Rosero, N. Dilek, J. Heatwole, E. Sawyer, A. Paker, G. Brooks, C. Beals, R. Gandhi, C. Heatwole. Oral Session presented at ALD Connect Annual Meeting and Patient Learning Academy; November 3-4, 2023; Houston, TX.
- “Development and Validation of Two Patient-Reported Outcome Measures: The Adrenoleukodystrophy- Health Index (ALD-HI) and Adrenomyeloneuropathy-Health Index (AMN-HI)”. A. Varma, S. Khosa, J. Weinstein, J. Seabury, S. Rosero, C. Engebrecht, N. Dilek, J. Heatwole, C. Irwin, C. Shupe, K. Chung, E. Sawyer, A. Paker, G. Brooks, C. Beals, R. Gandhi, C. Heatwole. The American Academy of Neurology 76th Annual Meeting; April 13-18, 2024; Denver, CO.
- “Development and Validation of Two Patient-Reported Outcome Measures: The Adrenoleukodystrophy- Health Index (ALD-HI) and Adrenomyeloneuropathy-Health Index (AMN-HI)” J. Weinstein, A. Varma, J. Seabury, S. Rosero, C. Engebrecht, N. Dilek, J. Heatwole, C. Irwin, C. Shupe, K. Chung, P. Kanagaiah, E. Sawyer, A. Paker, G. Brooks, C. Beals, R. Gandhi, C. Heatwole. Poster presented at ALD Connect Annual Meeting and Patient Learning Academy; November 8-9, 2024; Washington, DC.
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 AMN-HI score (0-100) representing overall disease burden.