Evidence mapPaperPMID 42440040Full record

ArticleAdvances in therapy2026

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

Andrea Bever, Shelagh M Szabo, Pramoda Jayasinghe, David Feeny, Peter J Neumann, Daniel C Malone, Susan T Iannaccone, Katherine L Gooch, Ivana F Audhya

Abstract read
PubMed Publisher
In one paragraph

Article in Advances in therapy, 2026. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 1 paper.

0numbers the graph read from it
0cells of the map it votes in
1citing papers in PubMed
field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

1 citing paper in PubMed.

  1. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

9 authors.

Andrea BeverBroadstreet Health Economics & Outcomes Research, 300 - 177 West 7th Ave, Vancouver, BC, V5Y 1L8, Canada.
Shelagh M SzaboBroadstreet Health Economics & Outcomes Research, 300 - 177 West 7th Ave, Vancouver, BC, V5Y 1L8, Canada. sszabo@broadstreetheor.com.ORCID http://orcid.org/0000-0002-9044-3192
Pramoda JayasingheBroadstreet Health Economics & Outcomes Research, 300 - 177 West 7th Ave, Vancouver, BC, V5Y 1L8, Canada.
David FeenyMcMaster University, Hamilton, ON, Canada.
Peter J NeumannTufts Medical Center, Boston, MA, USA.
Daniel C MaloneThe University of Utah, Salt Lake City, UT, USA.
Susan T IannacconeThe University of Texas Southwestern, Dallas, TX, USA.
Katherine L GoochSarepta Therapeutics, Inc., Cambridge, MA, USA.
Ivana F AudhyaSarepta Therapeutics, Inc., Cambridge, MA, USA.

Funding

No grant is acknowledged in the PubMed record.

6 · The paper itself

Abstract

introductionThe DMD-QoL is a disease-specific, preference-based measure (PBM). Its design was informed by the experiences of individuals with Duchenne muscular dystrophy (DMD), and it was developed to reflect a broader conceptualization of wellness and quality of life (QoL) compared with other PBMs. This study estimated and compared DMD-QoL and Health Utilities Index (HUI) utility in DMD.

methodsIndividuals with DMD or their caregivers completed the DMD-QoL and HUI-2 at baseline and 12 months. Participants were classified into health states based on upper and lower limb function. Mean utility and change over 12 months were calculated by baseline health state and respondent type; change in utility was also estimated among those in whom declining ambulatory function led to a health state transition.

resultsAmong 155 participants (caregiver-respondents, 78.7%), mean (standard deviation [SD]) patient age at baseline was 14.1 (6.9) years. Across health states, mean (SD) baseline DMD-QoL utility ranged from 0.62 (0.35) to 0.78 (0.10) (patient-assessed) and 0.63 (0.17) to 0.84 (0.12) (caregiver-assessed). Mean HUI-2 values ranged from 0.49 (0.07) to 0.96 (0.06) (patient-assessed) and 0.44 (0.09) to 0.85 (0.11) (caregiver-assessed). While DMD-QoL and HUI-2 utilities were relatively stable over 12 months, a clinically important and significant loss in HUI-2 utility (mean, - 0.16 [95% confidence interval, - 0.22, - 0.10]) was observed among 17 (11.0%) participants with worsening ambulatory function. No such change was observed with the DMD-QoL (0.00 [- 0.06, 0.06]).

conclusionDMD-QoL utilities did not vary meaningfully across health states compared with HUI-2 scores, which tended to decline with deteriorating mobility. The relative stability of DMD-QoL scores may reflect its broader conceptualization of QoL, grounded in the experiences of individuals with DMD.

Indexed as

DMD-QoLDuchenne muscular dystrophyHealth utilities index mark 2HUI-2Preference-based measuresUtility values

Identifiers

What Socratic holds

Textmetadata
Read underepoch 390

Registered trials

None linked

Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the Socratic graph.