Quality of life evaluation in epidermolysis bullosa (EB) through the development of the QOLEB questionnaire: An EB-specific quality of life instrument

British Journal of Dermatology

Volumn 161, Issue 6, 2009, Pages 1323-1330

  Frew, J W ^a,b   Martin, L K ^b   Nijsten, T ^c   Murrell, D F ^a,b  

^a UNIVERSITY OF NEW SOUTH WALES   (Australia)

^b ERASMUS MEDICAL CENTER   (Netherlands)

^c ST GEORGE HOSPITAL   (Australia)

Author keywords

Epidermolysis bullosa; QOLEB; Quality of life

Indexed keywords

ADOLESCENT; ADULT; ARTICLE; CHILD; EPIDERMOLYSIS BULLOSA; FACTORIAL ANALYSIS; FEMALE; HEALTH PRACTITIONER; HUMAN; INSTRUMENT VALIDATION; INTERNAL CONSISTENCY; INTERVIEW; MAJOR CLINICAL STUDY; MALE; PRIORITY JOURNAL; QUALITY OF LIFE IN EPIDERMOLYSIS BULLOSA; QUALITY OF LIFE INDEX; QUESTIONNAIRE; RELIABILITY; SCHOOL CHILD; SCORING SYSTEM; TEST RETEST RELIABILITY; VALIDITY;

ADOLESCENT; CHILD; CHILD, PRESCHOOL; EPIDEMIOLOGIC METHODS; EPIDERMOLYSIS BULLOSA; FEMALE; HEALTH KNOWLEDGE, ATTITUDES, PRACTICE; HUMANS; INFANT; MALE; PATIENT ACCEPTANCE OF HEALTH CARE; QUALITY OF LIFE; SEVERITY OF ILLNESS INDEX; TREATMENT OUTCOME; YOUNG ADULT;

EID: 70450231072     PISSN: 00070963     EISSN: 13652133     Source Type: Journal    
DOI: 10.1111/j.1365-2133.2009.09347.x     Document Type: Article

References (20)

1. Horn HM, Tidman MJ. The clinical spectrum of dystrophic epidermolysis bullosa. Br J Dermatol 2002 146 : 267 274.
2. Fine J-D, Eady RA, Bauer EA et al. The classification of inherited epidermolysis bullosa (EB): report of the Third International Consensus Meeting on Diagnosis and Classification of EB. J Am Acad Dermatol 2008 58 : 931 950.
3. Auquier P, Simeoni M, Robitail S. Quality of life measurement: a fashion or a valid assessment? Rev Neurol (Paris) 2006 162 : 508 514.
4. Horn HM, Tidman MJ. Quality of life in epidermolysis bullosa. Clin Exp Dermatol 2002 27 : 707 710.
5. Fine J-D, Johnson LB, Weiner M, Suchindran C. Assessment of mobility, activities and pain in different subtypes of epidermolysis bullosa. Clin Exp Dermatol 2004 29 : 122 127.
6. Finlay AY, Khan GK. Dermatology Life Quality Index (DLQI) - a simple practical measure for routine clinical use. Clin Exp Dermatol 1994 19 : 210 216.
7. Scheppingen C, Lettinga AT, Duipmans JC et al. Main problems experienced by children with epidermolysis bullosa: a qualitative study with semi-structured interviews. Acta Derm Venereol (Stockh) 2008 88 : 143 150.
8. Woodward CA, Chambers LW. Guide to Questionnaire Construction and Question Writing. Ottawa : Canadian Public Health Association, 1991.
9. Murphy B, Cockburn J, Murphy M. Focus groups in health research. Health Promot J Austr 1992 2 : 37 40.
10. McDowell I, Newell C. Measuring Health: A Guide to Rating Scales and Questionnaires. New York : Oxford University Press, 1996 18 19.
11. Wright JG, Feinstein AR. A comparative contrast of clinimetric and psychometric methods for constructing indexes and rating scales. J Clin Epidemiol 1992 45 : 1201 1218.
12. Yiasemides E, Walton J, Marr P et al. A comparative study of transmission electron microscopy vs immunofluorescence mapping for the diagnosis of epidermolysis bullosa. Am J Dermatopathol 2006 28 : 387 394.
13. Quine S. Questionnaire layout, format and response categories. In : Handbook of Public Health Methods (Kerr C, Taylor R, Heard G, eds). Sydney : McGraw-Hill, 1998 162 168.
14. Quine S. Questionnaires. In : Handbook of Public Health Methods (Kerr C, Taylor R, Heard G, eds). Sydney : McGraw-Hill, 1998 156 161.
15. Kirwan JR, Reeback JS. Stanford Health Assessment Questionnaire modified to assess disability in British patients with rheumatoid arthritis. Br J Rheumatol 1986 25 : 206 209.
16. Zigmond AS, Snaith RP. The Hospital Anxiety and Depression Scale. Acta Psychiatr Scand 1983 67 : 361 370.
17. O'Connor R. Measuring Quality of Life in Health. Sydney : Churchill Livingstone, 2004.
18. Uitto J, Richard G. Progress in epidermolysis bullosa: genetic classification and clinical implications. Am J Med Genet C Semin Med Genet 2004 131C : 61 74.
19. Desai NS, Poindexter GB, Monthrope YM et al. A pilot quality of life instrument for pruritus. J Am Acad Dermatol 2008 59 : 234 244.
20. Frew JW, Martin LK, Murrell DF. Development of the quality of life questionnaire for epidermolysis bullosa. Poster 1307, American Academy of Dermatology, San Antonio, Texas, 2008. J Am Acad Dermatol 2008 58 (Suppl. 2 AB81.