Quality of Life in Patients with Epidermolysis Bullosa

Czech version

Authors: J. Kýrová; H. Bučková
Authors‘ workplace: Dětské kožní oddělení Pediatrické kliniky, FN Brno a LF MU Brno primářka MUDr. Hana Bučková, Ph. D.
Published in: Čes-slov Derm, 88, 2013, No. 3, p. 123-127
Category: Clinical and laboratory Research

Overview

Skin disease can have a profound impact on many aspects of daily life, especially when affecting visible parts of the body. Pain, itch, odour and time-consuming dressings are problems influencing self-confidence, personal relationship, education and employment in patients with epidermolysis bullosa congenita.

Standardised questionnaires are useful tools for assessing the impact of disease on quality of life (QL). The aim of the authors was to assess the impact of epidermolysis bullosa on QL of patients treated in EB Centre Czech Republic in the period 2009–2010. Dermatology Life Quality Index (DLQI) and Children’s Dermatology Life Quality Index (CDLQI) questionnaires were used in the survey. Total of 43 patients (27 children and 16 adults) were included. More than one third of both children and adult patients stated large or very large impact on QL. The most serious impact on QL was found in patients with recesive dystrophic EB and in children with generalized form of simplex EB. On the other hand, patients with dominant dystrophic EB in both age groups indicated the lowest impact on QL.

Key words:
epidermolysis bullosa – quality of life – Dermatology life quality index – Children’s dermatology life quality index

Sources

1. AUGUSTIN, M., AMON, U., BULLINGER, M. et al. Reccomendations for the assessment of quality of life in dermatology. Dermatol Psychosom., 2000, 29, p. 122–127.

2. BEATTIE, P. E., LEWIS-JONES, M. S. A comparative study of impairment of quality of life in children with skin disease and children with other chronic childhood diseases. Br. J. Dermatol., 2006, 155, 1, p. 145–151.

3. DIHRIS-HIRCHE, J., MILCH, W. E., KUPFER, J. et al. Acta Derm. Venereol., 2012, 92, 5, p. 462–466.

4. FINE, J.-D., JOHNSON, L. B., WEINER, M. et al. Assessment of mobility, activities and pain in different subtypes of epidermolysis bullosa. Clin Exp. Dermatol., 2004, 29, 2, p. 122–127.

5. FINE, J.-D., JOHNSON, L. B., WEINER, M. et al. Impact of inherited epidermolysis bullosa on parental interpersonal relationships, marital status and family size. Br. J. Dermatol., 2005, 152, 5, p. 1009–1014.

6. FINLAY, A. Y., BASRA, M. K. A., PIGUET, V. et al. Dermatology Life Quality Index (DLQI): A Paradigm Shift to Patient-Centered Outcomes. J. Invest. Dematol., 2012, 132, 10, p. 2464–2465.

7. HONGBO, Y., THOMAS, CH. L., MICHAEL, A. et al. Translating the Science of Quality of Life into Practice: What Do Dermatology Life Quality Index Scores Mean? J. Invest. Dematol., 2005, 125, 4, p. 659–664.

8. HORN, H. M., TIDMAN, M. J. Quality of life in epidermolysis bullosa. Clin. Exp. Dermatol., 2002, 27, 8, p. 707–710.

9. LANSCHUETZER, CH. M., FINE, J. D. Classification and molecular basis of hereditary epidermolysis bullosa. In Fine, J. D., Hintner, H. Life with Epidermolysis Bullosa (EB): Etiology, Diagnosis, Multidisciplinary Care and Therapy. Wien: Springer Wien New York, 2009, p. 6–23.

10. LEWIS, V., FINLAY, A. J. Investig. Dermatol. Symp. Proc., 2004, 9, 2, p. 169–180.

11. MARGANI, F., LECCE, P. A., SANTAMATO, W. et al. Psychiatric symptoms and quality of life in patients affected by Epidermolysis bullosa. J. Clin. Psychol. Med. Settings, 2010, 17, 4, p. 333–339.

12. MATEŘENKOVÁ, A., SCHMIEDBERGEROVÁ, R., HERCOGOVÁ, J. Kvalita života a psoriáza – první výsledky dotazníkového šetření mezi českými psoriatiky. Čes.-slov. Derm., 2008, 83, 6, p. 229–304.

13. BALAŠTÍK, D., VAŠKŮ, V. et al. Skupinová psychoterapie u pacientů s psoriázou. Čes. -slov. Derm., 2007, 82, 1, p. 26–30.

14. SEMRÁDOVÁ, V., BALAŠTÍK, D., Možnosti hodnocení kvality života nemocných s psoriázou. Čes.-slov. Derm., 2003, 78, 6, p. 228–231.

15. SEMRÁDOVÁ, V., VAŠKŮ, V., BALAŠTÍK, D. et al. Kvalita života u pacientů s psoriasis vulgaris. I. Vliv terapie na kvalitu života. Čes.-slov. Derm., 2006, 81, 3, p. 153–161.

16. TABOLLI, S., SAMPOGNA, F., DI PIETRO, C. et al. Quality of life in patients with epidermolysis bullosa. Br. J. Dermatol., 2009, 161, 4, p. 869–877.

17. VOJÁČKOVÁ, N., SLAVÍKOVÁ, Š., VAŇOUSOVÁ, D. et al. Kvalita pacientů s lymfedémem. První výsledky. Čes.-slov. Derm., 2009, 84, 3, p. 134–137.

18. WEISSHAAR, E., DIEPGEN, T. L., BRUCKNER, T. et al. Acta Derm. Venereol., 2008, 88, 3, p. 234–239.

Labels

Dermatology & STDs Paediatric dermatology & STDs

Atypical Melanocytic Lesions

Bullous Pemphigoid Induced by Vaccination

Article was published in

Czech-Slovak Dermatology

2013 Issue 3