The development and validation of the Treatment of Autoimmune Bullous Disease Quality of Life questionnaire, a tool to measure the quality of life impacts of treatments used in patients with autoimmune blistering disease

British Journal of Dermatology

Volumn 169, Issue 5, 2013, Pages 1000-1006

  Tjokrowidjaja, A ^a,b   Daniel, B S ^a,b   Frew, J W ^a   Sebaratnam, D F ^a   Hanna, A M ^a,b   Chee, S ^a,b   Dermawan, A ^a,b   Wang, C Q ^a,b   Lim, C ^a,b   Venugopal, S S ^a   Rhodes, L M ^c   Welsh, B ^d   Nijsten, T ^e   Murrell, D F ^a,b  

^a ST GEORGE HOSPITAL   (Australia)

^b UNIVERSITY OF NEW SOUTH WALES   (Australia)

^c Premier Specialists Kogarah   (Australia)

^d ST VINCENT S HOSPITAL   (Australia)

^e ERASMUS MEDICAL CENTER   (Netherlands)

Author keywords

[No Author keywords available]

Indexed keywords

AZATHIOPRINE; CYCLOPHOSPHAMIDE; DAPSONE; IMMUNOGLOBULIN; METHOTREXATE; MINOCYCLINE; MYCOPHENOLIC ACID 2 MORPHOLINOETHYL ESTER; PREDNISOLONE; PREDNISONE; RITUXIMAB; STEROID;

ADULT; AGED; ARTICLE; AUTOIMMUNE BULLOUS DISEASE QUALITY OF LIFE QUESTIONNAIRE; AUTOIMMUNE DISEASE; BULLOUS PEMPHIGOID; BULLOUS SKIN DISEASE; CONTENT VALIDITY; DERMATOLOGY LIFE QUALITY INDEX; DISCRIMINANT VALIDITY; EPIDERMOLYSIS BULLOSA ACQUISITA; FACE VALIDITY; FACTORIAL ANALYSIS; FEMALE; HUMAN; INTERNAL CONSISTENCY; INTERVIEW; LINEAR IGA BULLOUS DERMATOSIS; MAJOR CLINICAL STUDY; MALE; MUCOUS MEMBRANE PEMPHIGOID; PEMPHIGUS FOLIACEUS; PEMPHIGUS VULGARIS; PRIORITY JOURNAL; QUALITY OF LIFE; QUESTIONNAIRE; TEST RETEST RELIABILITY; TREATMENT RESPONSE; VALIDATION PROCESS;

ADULT; AGED; AGED, 80 AND OVER; AUTOIMMUNE DISEASES; FEMALE; HUMANS; MALE; MIDDLE AGED; PILOT PROJECTS; QUALITY OF LIFE; QUESTIONNAIRES; SKIN DISEASES, VESICULOBULLOUS; YOUNG ADULT;

EID: 84887058903     PISSN: 00070963     EISSN: 13652133     Source Type: Journal    
DOI: 10.1111/bjd.12623     Document Type: Article

References (22)

1. Saxena S, Orley J,. Quality of life assessment: the World Health Organization perspective. Eur Psychiatry 1997; 12 (Suppl. 3): 263-6s.
2. Balkrishnan R, Manuel J, Feldman SR, Rapp SR,. Measurement of health-related quality of life (HRQOL) associated with skin disease. J Am Acad Dermatol 2004; 51 (Suppl. 1): S3-4.
3. Hertl M,. Autoimmune Diseases of the Skin: Pathogenesis, Diagnosis, Management, 2nd edn. Vienna: Springer, 2005.
4. Winsett RP, Arheart K, Stratta RJ, et al,. Evaluation of an immunosuppressant side effect instrument. Prog Transplant 2004; 14: 210-16, 240.
5. Foster JM, van der Molen T, Caeser M, Hannaford P,. The use of questionnaires for measuring patient-reported side effects of drugs: its importance and methodological challenges. Pharmacoepidemiol Drug Saf 2008; 17: 278-96.
6. Guidry JA, George JN, Vesely SK, et al,. Corticosteroid side-effects and risk for bleeding in immune thrombocytopenic purpura: patient and hematologist perspectives. Eur J Haematol 2009; 83: 175-82.
7. Nousari HC, Anhalt GJ,. Basic pharmacological approach to immunosuppressive therapy for autoimmune blistering diseases. Dermatol Ther 2002; 15: 293-7.
8. Franke GH, Yucetin L, Yaman H, et al,. Disease-specific quality of life in Turkish patients after successful kidney transplantation. Transplant Proc 2006; 38: 457-9.
9. Kugler C, Fischer S, Gottlieb J, et al,. Symptom experience after lung transplantation: impact on quality of life and adherence. Clin Transplant 2007; 21: 590-6.
10. Dobbels F, Moons P, Abraham I, et al,. Measuring symptom experience of side-effects of immunosuppressive drugs: the Modified Transplant Symptom Occurrence and Distress Scale. Transpl Int 2008; 21: 764-73.
11. Schiffner R, Schiffner-Rohe J, Landthaler M, Stolz W,. Treatment of atopic dermatitis and impact on quality of life: a review with emphasis on topical non-corticosteroids. Pharmacoeconomics 2003; 21: 159-79.
12. Schiavo AL, Puca RV, Ruocco V, Ruocco E,. Adjuvant drugs in autoimmune bullous diseases, efficacy versus safety: facts and controversies. Clin Dermatol 2010; 28: 337-43.
13. Grob JJ,. Why are quality of life instruments not recognized as reference measures in therapeutic trials of chronic skin disorders? J Invest Dermatol 2007; 127: 2299-301.
14. Pfutze M, Niedermeier A, Hertl M, Eming R,. Introducing a novel Autoimmune Bullous Skin Disorder Intensity Score (ABSIS) in pemphigus. Eur J Dermatol 2007; 17: 4-11.
15. Gaines E, Werth VP,. Development of outcome measures for autoimmune dermatoses. Arch Dermatol Res 2008; 300: 3-9.
16. Finlay AY, Khan GK,. Dermatology Life Quality Index (DLQI)-a simple practical measure for routine clinical use. Clin Exp Dermatol 1994; 19: 210-16.
17. Brazier JE, Harper R, Jones NM, et al,. Validating the SF-36 health survey questionnaire: new outcome measure for primary care. BMJ 1992; 305: 160-4.
18. Sebaratnam DF, Hanna AM, Chee SN, et al,. The development of a quality of life instrument for autoimmune bullous disease: the Autoimmune Bullous Disease Quality of Life questionnaire. JAMA Dermatol 2013; doi: 10.1001/jamadermatol. 2013.4972 [Epub ahead of print].
19. Kondo-Endo K, Ohashi Y, Nakagawa H, et al,. Development and validation of a questionnaire measuring quality of life in primary caregivers of children with atopic dermatitis (QPCAD). Br J Dermatol 2009; 161: 617-25.
20. Bravo G, Potvin L,. Estimating the reliability of continuous measures with Cronbach's alpha or the intraclass correlation coefficient: toward the integration of two traditions. J Clin Epidemiol 1991; 44: 381-90.
21. Murrell DF, Daniel BS, Joly P, et al,. Definitions and outcome measures for bullous pemphigoid: recommendations by an international panel of experts. J Am Acad Dermatol 2012; 66: 479-85.
22. Martin LK, Werth V, Villanueva E, et al,. Interventions for pemphigus vulgaris and pemphigus foliaceus. Cochrane Database Syst Rev 2009; 2009: CD006263.