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Center for Health + Technology [CHeT]

URMC / Center for Health + Technology / Our Expertise / CHeT Outcomes / SBMA-HI: The Spinal-Bulbar Muscular Atrophy Health Index

 

SBMA-HI: The Spinal-Bulbar Muscular Atrophy Health Index

  • Type of Clinical Outcome Assessment (COA): Patient-reported outcome measure (PRO)
  • Administration Mode: Self-administered
  • Therapeutic Area: Spinal-bulbar muscular atrophy
  • Approximate Completion Time: ~10 minutes
  • Required Supervision: None
  • Recall Period: Immediate point in time

Instrument Variations

  • The Spinal-Bulbar Muscular Atrophy Health Index Short Form (SBMA-HI-SF)
    • SBMA-HI Short From Completion Time: Under 1 minute

Symptom Subscales

  • Number of Independently Validated Symptom Subscales: 14

Mobility & Ambulation; Activity Participation; Hip, Thigh & Knee Strength; Fatigue; Social Health; Shoulder & Arm Function; Hand & Finger Function; Swallowing Function; Sleep & Daytime Sleepiness; Pain; Numbness; Emotional Health; Breathing Function; Communication

Instrument Attributes

  • The SBMA-HI is a patient-reported outcome (PRO) measure designed to assess symptoms and health-related quality-of-life from the perspective of patients with spinal-bulbar muscular atrophy.
  • 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 SBMA-HI is a fully valid, reliable, responsive, and disease-specific instrument capable of measuring changes in patient-reported health in patients with spinal-bulbar muscular atrophy.
  • The instrument was developed using extensive patient input, including an analysis of 729 patient quotes and a large cross-sectional study involving 223 patients.
  • The SBMA-HI is highly relevant to patients, has low patient burden, correlates with markers of disease severity, and demonstrates low floor and no ceiling effects.
  • Developed in conjunction with the NIH for use in therapeutic trials.
  • The SBMA-HI and its subscales demonstrated a high internal consistency (Cronbach α = 0.94 for the full instrument).
  • English

Additional translations available upon request.

  • Guber RD, Kokkinis AD, Schindler AB, Bendixen RM, Heatwole CR, Fischbeck KH, Grunseich C. Patient-identified impact of symptoms in spinal and bulbar muscular atrophy. Muscle Nerve. 2018 Jan;57(1):40-44. doi: 10.1002/mus.25957. Epub 2017 Sep 25. PMID: 28877556; PMCID: PMC5763365.
Pending

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 SBMA-HI score (0-100) representing overall disease burden.

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