Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.

StudyQuality of life research : an international journal of quality of life aspects of treatment, care and rehabilitation· Jul 2026

Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.

Damian Lewis, Adam B Smith, Marjolijn van Keep … Andria Joseph

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Pediatric DermatologyStudyQ1IF 3.6

Severe wounds in dystrophic epidermolysis bullosa rated worse than death by proxies.

Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.

Damian Lewis … Andria Joseph

Quality of life research · Jul 2026

Purpose

Qualitative accounts and studies employing disease-specific outcome measures have demonstrated that people with dystrophic epidermolysis bullosa (dystrophic epidermolysis bullosa) display impaired health-related quality of life (health-related quality of life) due to wound-related challenges.

Methods

Valued the vignettes from the perspective of a patient or a caregiver proxy using the EQ-5D-3L or EQ-5D-Y-3L, respectively.

n = 1139

-0.550

Results

-0.550

EQ-5D utility scores below 0 mean a health state rated worse than death.

n = 1139

More results

The mean utilities elicited from the patient perspective ranged from 0.491 to - 0.448 and 0.457 to - 0.462 for the general population (N = 627) and dystrophic epidermolysis bullosa (N = 31) sample, respectively.

“

Conclusion

The findings join a limited evidence base indicating that the symptoms associated with the wounds experienced by people with dystrophic epidermolysis bullosa have a considerable detrimental effect on their health-related quality of life.

Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.

Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa.

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