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Purpose <p>Qualitative accounts and studies employing disease-specific outcome measures have demonstrated that people with dystrophic epidermolysis bullosa (DEB) display impaired health-related quality of life (HRQoL) due to wound-related challenges. There is a paucity of utility data necessary to inform the health economic evaluation of emerging treatments for cutaneous open wounds.</p> Methods <p>The objective was to implement a vignette study with a representative sample of the United Kingdom (UK) general population (N = 1139) and people with DEB (N = 44) to estimate utility values. Vignettes were defined by various attributes, including the number and area of wounds, pain, itch and hours spent managing wounds. Participants valued the vignettes from the perspective of a patient or a caregiver proxy using the EQ-5D-3L or EQ-5D-Y-3L, respectively.</p> Results <p>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 DEB (N = 31) sample, respectively. The utilities elicited from the proxy perspective ranged from 0.443 to − 0.543 and 0.079 to − 0.550 in the general population (N = 512) and DEB (N = 13) sample, respectively.</p> Conclusion <p>The findings join a limited evidence base indicating that the symptoms associated with the wounds experienced by people with DEB have a considerable detrimental effect on their HRQoL.</p>

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Eliciting health state utilities for open wounds in dystrophic epidermolysis bullosa

  • 期刊论文

  • 出版模式：

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  • 发表日期：

    2026年7月23日

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  • Damian Lewis,
  • Adam B. Smith,
  • Marjolijn van Keep,
  • Anna E. Martinez,
  • Gabriela Petrof,
  • Sagair Hussain,
  • Sophie Jones,
  • Sharmila Nikapota,
  • Andria Joseph

摘要

Purpose

Qualitative accounts and studies employing disease-specific outcome measures have demonstrated that people with dystrophic epidermolysis bullosa (DEB) display impaired health-related quality of life (HRQoL) due to wound-related challenges. There is a paucity of utility data necessary to inform the health economic evaluation of emerging treatments for cutaneous open wounds.

Methods

The objective was to implement a vignette study with a representative sample of the United Kingdom (UK) general population (N = 1139) and people with DEB (N = 44) to estimate utility values. Vignettes were defined by various attributes, including the number and area of wounds, pain, itch and hours spent managing wounds. Participants valued the vignettes from the perspective of a patient or a caregiver proxy using the EQ-5D-3L or EQ-5D-Y-3L, respectively.

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 DEB (N = 31) sample, respectively. The utilities elicited from the proxy perspective ranged from 0.443 to − 0.543 and 0.079 to − 0.550 in the general population (N = 512) and DEB (N = 13) sample, respectively.

Conclusion

The findings join a limited evidence base indicating that the symptoms associated with the wounds experienced by people with DEB have a considerable detrimental effect on their HRQoL.