Duchenne Muscular Dystrophy Quality of Life Measure (DMD QoL)

DMD-QoL logo

The DMD QoL is the first condition-specific preference-based measure of health-related quality of life (HRQoL) in people with Duchenne Muscular Dystrophy (DMD).

Background

The DMD QoL can be used in cost-effectiveness evaluations of new healthcare interventions. It is the product of a study which featured input from  a  multidisciplinary  team  working  with  the  charity  Duchenne  UK,  clinicians,  patients  and  primary  caregivers  of  people  with DMD.

The DMD QoL is a 14 item questionnaire available as a patient reported version and a proxy version.

 

Scoring System

The DMD-QoL has a hierarchical (or ‘higher-order’) factor structure, with 3 lower-order factors (physical, social, and psychological) and 1 higher-order factor (overall quality of life [QoL], comprised of the 3 lower-order factors).

A simple, summative scoring system is proposed for each of the 3 lower-order factors, and consequently the higher-order factor (QoL) being a composite score of these.

Higher scores represent a more positive QoL (overall or within each subscale).

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Funding

This work was supported by Duchenne UK under the Project Hercules funding stream.

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Administration Methods

The DMD-QoL is to date validated for pen and paper completion. Careful migration to a digital delivery format (for example screen based device) can be authorised. Please contact us for advice.

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