Living with Epidermolysis Bullosa: Reviewing the Impact on Individuals’ Quality of Life


Fig. 74.1
Quality of Life in Epidermolysis Bullosa (QOLEB) Questionnaire

Currently only an adult form of this questionnaire exists, although translation and validation of the questionnaire in other languages as well as a paediatric form of the questionnaire are forthcoming. Further statistical validation is also underway through anchor- and distribution-based banding methods to determine mild, moderate, severe and extreme QOL impairment for ease of interpretation of this valid score and definition of a minimal clinically important difference in the QOLEB score. This would aid in use of the score as a longitudinal measurement tool and for use in evaluating new interventions in EB.

74.5 Conclusion

Living with epidermolysis bullosa has a significant impact on an individual’s quality of life. Recent studies over the past decade have identified the extent of how this condition affects individual patients and their families. The identification of specific areas which are impacted by EB facilitates better patient management as well as exploring other areas such as psychological and social supports in which research and awareness is currently lacking. The development of an EB-specific quality of life tool also gives scope for longitudinal measurement of patient conditions in order to evaluate new and future interventions.



Horn HM, Tidman MJ. Quality of life in epidermolysis bullosa. Clin Exp Dermatol. 2002;27:707–10.CrossRefPubMed


Frew JW, Martin LK, Nijsten. Quality of life evaluation in epidermolysis bullosa (EB) through the development of the QOLEB questionnaire: an EB-specific quality of life instrument. Br J Dermatol. 2009;161:1323–30.CrossRefPubMed


WHOQOL Group. The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Soc Sci Med. 1995;41:1403–9.CrossRef

Jun 3, 2017 | Posted by in Dermatology | Comments Off on Living with Epidermolysis Bullosa: Reviewing the Impact on Individuals’ Quality of Life

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