Quality of Life Measurements in Epidermolysis Bullosa: Tools for Clinical Research and Patient Care

Dermatologic Clinics

Volumn 28, Issue 1, 2010, Pages 185-190

  Frew, John W ^a,b   Murrell, Dédée F ^a,b  

^a UNIVERSITY OF NEW SOUTH WALES   (Australia)

^b ST GEORGE HOSPITAL   (Australia)

Author keywords

Epidermolysis bullosa; Measurement tools; QOLEB; Quality of life; Questionnaires

Indexed keywords

ACCURACY; CLINICAL RESEARCH; CONTENT VALIDITY; DAILY LIFE ACTIVITY; DEPRESSION; EPIDERMOLYSIS BULLOSA; HEALTH CARE QUALITY; HUMAN; OUTCOME ASSESSMENT; PATIENT ADVOCACY; PATIENT ATTITUDE; PATIENT CARE; PHENOTYPIC VARIATION; PRIORITY JOURNAL; QUALITATIVE ANALYSIS; QUALITY OF LIFE; QUANTITATIVE ANALYSIS; QUESTIONNAIRE; REVIEW; SHORT FORM 36; SOCIAL PSYCHOLOGY; STATISTICAL ANALYSIS;

EPIDERMOLYSIS BULLOSA; HUMANS; QUALITY OF LIFE; QUESTIONNAIRES;

EID: 70450277403     PISSN: 07338635     EISSN: None     Source Type: Journal    
DOI: 10.1016/j.det.2009.10.019     Document Type: Review

References (16)

1. World Health Organisation (WHO). Preamble to the Constitution of the World Health Organization as adopted by the International Health Conference. New York: WHO; June 19-22, 1946. Official records of the WHO no. 2. p. 100.
2. Kerr C., Taylor R., and Heard G. Handbook of public health methods unit 24: questionnaires (1998), McGraw-Hill, Sydney p. 156-61.
3. ÓConnor R. Measuring quality of life in health (2004), Churchill Livingstone, Sydney
4. Halioua B., Beumont M., and Lunel F. Quality of life in dermatology. Int J Dermatol 39 (2000) 801-806
5. Horn H., and Tidman M. Quality of life in epidermolysis bullosa. Clin Exp Dermatol 27 (2002) 707-710
6. Scheppingen C., Lettinga A.T., Duipmans J.C., et al. Main problems experienced by children with epidermolysis bullosa: a qualitative study with semi-structured interviews. Acta Derm Venereol 88 (2008) 143-150
7. Finlay A., and Khan K. Dermatology Life Quality Index (DLQI)-a simple practical measure for routine clinical use. Clin Exp Dermatol 19 (1994) 210-216
8. Frew J, Martin L, Murrell DF. Quality of life evaluation in epidermolysis bullosa. Presented at the Australasian College of Dermatologists, 40th Annual Scientific Meeting; Adelaide, Australia; May 13-16, 2007.
9. Frew JW, Martin LK, Murrell DF. Development of the quality of life questionnaire for epidermolysis bullosa. Presented at the 66th Annual Meeting of the American Academy of Dermatology; San Antonio, Texas; February 1-5, 2008.
10. Frew JW, Martin LK, Murrell DF. Development of a quality of life instrument for epidermolysis bullosa. Presented at the 2008 International Investigative Dermatology Meeting; Kyoto, Japan; May 14-17, 2008.
11. Frew J.W., Martin L.K., Nijsten T., and Murrell D.F. Development of a quality of life index for epidermolysis bullosa (EB) through the development of the QOLEB questionnaire, an EB-specific quality of life instrument. Br J Dermatol (2009) in press. DOI: 10.111/j.1365-2133.2009.09347.x
12. 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 29 (2004) 122-127
13. 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 152 (2005) 1009-1014
14. Scheppingen C., Lettinga A.T., Duipmans J.C., et al. The main problems of parents of a child with epidermolysis bullosa. Qual Health Res 18 4 (2008) 545-556
15. Holme S.A., Man I., Sharpe S.L., et al. The children's dermatology life quality index: validation of the cartoon version. Br J Dermatol 148 (2003) 285-290
16. Tabolli S., Sampogna F., Di Pietro C., et al. Quality of life in patients with epidermolysis bullosa. Br J Dermatol 161 4 (2009) 869-877