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Related Experiment Video

Updated: Jul 14, 2026

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy
09:18

Measurements of Motor Function and Other Clinical Outcome Parameters in Ambulant Children with Duchenne Muscular Dystrophy

Published on: January 12, 2019

Estimating Utility Values Using the DMD-QoL: A Disease-Specific Preference-Based Measure for Duchenne Muscular

Andrea Bever1, Shelagh M Szabo2, Pramoda Jayasinghe1

  • 1Broadstreet Health Economics & Outcomes Research, 300 - 177 West 7th Ave, Vancouver, BC, V5Y 1L8, Canada.

Advances in Therapy
|July 13, 2026
PubMed
Summary

The DMD-QoL utility measure remained stable in Duchenne muscular dystrophy (DMD) patients over 12 months. Unlike the Health Utilities Index (HUI-2), DMD-QoL did not show declines with worsening mobility, reflecting its broader quality of life conceptualization.

Keywords:
DMD-QoLDuchenne muscular dystrophyHUI-2Health utilities index mark 2Preference-based measuresUtility values

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Area of Science:

  • Health Economics and Outcomes Research
  • Clinical Trial Methodology
  • Patient-Reported Outcomes

Background:

  • The Duchenne Muscular Dystrophy Quality of Life (DMD-QoL) is a preference-based measure (PBM) designed for individuals with Duchenne muscular dystrophy (DMD).
  • It aims to capture a broader concept of wellness and quality of life (QoL) compared to existing PBMs.
  • This study sought to estimate and compare the utility values derived from DMD-QoL and the Health Utilities Index (HUI-2) in DMD patients.

Purpose of the Study:

  • To estimate and compare utility values derived from the DMD-QoL and HUI-2 in individuals with Duchenne muscular dystrophy (DMD).
  • To assess the responsiveness of both measures to changes in health status, particularly ambulatory function, over a 12-month period.
  • To evaluate the conceptual alignment of DMD-QoL with the lived experiences of individuals with DMD.

Main Methods:

  • 155 individuals with DMD or their caregivers completed the DMD-QoL and HUI-2 at baseline and 12 months.
  • Participants were categorized into health states based on upper and lower limb function.
  • Mean utility values and changes over 12 months were calculated by health state and respondent type, including analysis of utility changes in participants experiencing declining ambulatory function.

Main Results:

  • Mean baseline DMD-QoL utility ranged from 0.62 to 0.78 (patient-assessed) and 0.63 to 0.84 (caregiver-assessed) across health states.
  • Mean baseline HUI-2 values ranged from 0.49 to 0.96 (patient-assessed) and 0.44 to 0.85 (caregiver-assessed).
  • While both measures were stable over 12 months, HUI-2 showed a significant decline (-0.16) in participants with worsening ambulatory function, whereas DMD-QoL utility remained stable (0.00).

Conclusions:

  • DMD-QoL utilities showed less variation across health states compared to HUI-2 scores.
  • HUI-2 scores demonstrated sensitivity to declining mobility, a change not reflected in DMD-QoL scores.
  • The stability of DMD-QoL scores suggests its broader conceptualization of QoL, grounded in the experiences of individuals with DMD, may be more appropriate for this population.