Skip to main content
SpringerLink
Log in

Quality of Life in Autoimmune Blistering Diseases

  • Chapter
  • First Online:
Blistering Diseases

Abstract

Skin diseases are rarely life threatening; however, they are capable of a massive impact on QOL. The findings of the application of QOL tools can be used together with clinical assessment and disease activity parameters to score disease severity objectively. Studies exploring QOL in autoimmune bullous dermatosis (AIBD) have focused predominantly on pemphigus (i.e., pemphigus vulgaris, PV, and pemphigus foliaceus, PF) and bullous pemphigoid. Studies regarding other forms of pemphigus as well as other acquired bullous diseases such as mucous membrane pemphigoid, epidermolysis bullosa acquisita (EBA), and linear IgA bullous dermatosis are few and sparse. Disease-specific QOL instruments are even more perceptive than skin-specific tools, but no AIBD-specific QOL instrument has yet been devised despite efforts by several researchers to develop the Autoimmune Bullous Disease Quality of Life Questionnaire (ABQOL).

This is a preview of subscription content, log in via an institution to check access.

Access this chapter

Log in via an institution
Chapter
USD 29.95
Price excludes VAT (USA)
  • Available as PDF
  • Read on any device
  • Instant download
  • Own it forever
eBook
USD 129.00
Price excludes VAT (USA)
  • Available as EPUB and PDF
  • Read on any device
  • Instant download
  • Own it forever
Softcover Book
USD 169.99
Price excludes VAT (USA)
  • Compact, lightweight edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info
Hardcover Book
USD 249.99
Price excludes VAT (USA)
  • Durable hardcover edition
  • Dispatched in 3 to 5 business days
  • Free shipping worldwide - see info

Tax calculation will be finalised at checkout

Purchases are for personal use only

Institutional subscriptions

References

  1. 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.

    Article  Google Scholar 

  2. World Health Organization. Constitution of the world health organization. In: Basic documents. 45th ed., Supplement, October 2006 from the Fifty-First World Health Assembly. Geneva: WHO; 2006. p. 1.

    Google Scholar 

  3. Rapp S, Feldman S, Exum M, et al. Psoriasis causes as much disability as other major medical diseases. J Am Acad Dermatol. 1999;41:401–7.

    Article  CAS  PubMed  Google Scholar 

  4. Sheffield D, Biles PL, Orom H, Maixner W, Sheps DS. Race and sex differences in cutaneous pain perception. Psychosom Med. 2000;62:517–23.

    Article  CAS  PubMed  Google Scholar 

  5. Ryan TJ. Disability in dermatology. Br J Hosp Med. 1991;46:33–6.

    CAS  PubMed  Google Scholar 

  6. Tabolli S, Alessandroni L, Gaido J, Sampogna F, Di Pietro C, Abeni D. Health-related quality of life and nail disorders. Acta Derm Venereol. 2007;87:255–9.

    PubMed  Google Scholar 

  7. De Korte J, Mombers FM, Sprangers MA, Bos JD. The suitability of quality of life questionnaires for psoriasis research: a systematic literature review. Arch Dermatol. 2002;138:1221–7.

    Article  PubMed  Google Scholar 

  8. Ferrario SR, Baiardi P, Zotti AM. Update on family strain questionnaire: a tool for the general screening of caregiving-related problems. Qual Life Res. 2004;13:1425–34.

    Article  Google Scholar 

  9. Sampogna F, Chren MM, Melchi CF, Pasquini P, Tabolli S, Abeni D. Age, gender, quality of life and psychological distress in patients hospitalized with psoriasis. Br J Dermatol. 2006;154:325–31.

    Article  CAS  PubMed  Google Scholar 

  10. Apolone G, Mosconi P. The Italian SF-36 health survey: translation, validation and norming. J Clin Epidemiol. 1998;51:1025–36.

    Article  CAS  PubMed  Google Scholar 

  11. Sampogna F, Sera F, Abeni D. IDI Multipurpose Psoriasis Research on Vital Experiences (IMPROVE) investigators. Measures of clinical severity, quality of life, and psychological distress in patients with psoriasis: a cluster analysis. J Invest Dermatol. 2004;122:602–7.

    Article  CAS  PubMed  Google Scholar 

  12. Sampogna F, Tabolli S, Soderfeldt B, et al. Measuring quality of life of patients with different clinical types of psoriasis using the SF-36. Br J Dermatol. 2006;154:844–9.

    Article  CAS  PubMed  Google Scholar 

  13. Kiebzak G, Pierson L, Campbell M, et al. Use of the SF36 general health status survey to document health-related quality of life in patients with coronary artery disease: effect of disease and response to coronary artery bypass graft surgery. Heart Lung. 2002;31(3):207–13.

    Article  PubMed  Google Scholar 

  14. Wiebe S, Guyatt G, Weaver B, et al. Comparative responsiveness of generic and specific quality-of-life instruments. J Clin Epidemiol. 2003;56:52–60.

    Article  PubMed  Google Scholar 

  15. Ware Jr J, Sherbourne C. The MOS 36-item short form health survey (SF-36). Conceptual framework and item selection. Med Care. 1992;30:472–83.

    Google Scholar 

  16. Anderson RT, Rajagopalan R. Development and validation of a quality of life instrument for cutaneous disease. J Am Acad Dermatol. 1997;37:41–50.

    Article  CAS  PubMed  Google Scholar 

  17. Finlay A, Khan G. Dermatology Life Quality Index (DLQI)—a simple practical measure for routine clinical use. Clin Exp Dermatol. 1994;19:210–6.

    Article  CAS  PubMed  Google Scholar 

  18. Morgan M, McCreedy R, Simpson J, Hay RJ. Dermatology quality of life scales: a measure of impact of skin diseases. Br J Dermatol. 1997;136:202–6.

    Article  CAS  PubMed  Google Scholar 

  19. Chren MM, Lasek RJ, Flacke SA, Zyzanski SJ. Improved discriminative and evaluative capability of a refined version of Skindex, a quality of life instrument for patients with skin diseases. Arch Dermatol. 1997;133:1433–40.

    Article  CAS  PubMed  Google Scholar 

  20. Chren MM, Lasek RJ, Sahay AP, Sands LP. Measurement properties of Skindex-16: a brief quality-of-life measure for patients with skin disease. J Cutan Med Surg. 2001;5:105–10.

    Article  CAS  PubMed  Google Scholar 

  21. Nijsten T, Sampogna F, Chren M, et al. Testing and reducing Skindex-29 using Rasch analysis: skindex-17. J Invest Dermatol. 2006;126:1244–50.

    Article  CAS  PubMed  Google Scholar 

  22. Abeni D, Picardi A, Pasquini P, et al. Further evidence of the validity and reliability of the Skindex-29: an Italian study on 2,242 dermatological outpatients. Dermatology. 2002;204:43–9.

    Article  CAS  PubMed  Google Scholar 

  23. Cohen A, Ofek-Schlomai A, Vardy D, et al. Depression in dermatological patients identified by the mini international neuropsychiatric interview questionnaire. J Am Acad Dermatol. 2005;54(1):94–9.

    Article  PubMed  Google Scholar 

  24. Goldberg D, Williams P. A user’s guide to the general health questionnaire. Windsor: NFER-Nelson; 1998.

    Google Scholar 

  25. Goldberg D. The detection of psychiatric illness by questionnaire. London: Oxford University Press; 1972.

    Google Scholar 

  26. Picardi A, Abeni D, Pasquini P. Assessing psychological distress in patients with skin diseases: reliability, validity and factor structure of the GHQ-12. J Eur Acad Dermatol Venereol. 2001;15:410–7.

    Article  CAS  PubMed  Google Scholar 

  27. Renzi C, Tabolli S, Picardi A, et al. Effects of patient satisfaction with care on health-related quality of life: a prospective study. J Eur Acad Dermatol Venereol. 2005;19:712–8.

    Article  CAS  PubMed  Google Scholar 

  28. Chee S, Martin L, Murrell D. The development of a quality of life instrument specific for pemphigus. J Invest Dermatol. 2009;129:2908–23.

    Article  Google Scholar 

  29. Chen S. Dermatology quality of life instruments: sorting out the quagmire. J Invest Dermatol. 2007;127:2726–39.

    Article  Google Scholar 

  30. Frew JW, Martin LK, Nijsten T, et al. 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.

    Article  CAS  PubMed  Google Scholar 

  31. Frew JW, Murrell DF. Quality of life measurements in epidermolysis bullosa: tools for clinical research and patient care. Dermatol Clin. 2010;28:185–90.

    Article  CAS  PubMed  Google Scholar 

  32. Frew JW, Venugopal SS, Murrell DF. Quality of life outcomes of cultured allogeneic fibroblast therapy recipients with epidermolysis bullosa. Aust J Dermatol. 2011;52 Suppl 1:26.

    Google Scholar 

  33. Both H, Essink-Bot M, Busschbach J, et al. Critical review of generic and dermatology-specific health-related quality of life instruments. J Invest Dermatol. 2007;127:2726–39.

    Article  CAS  PubMed  Google Scholar 

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

    Article  CAS  PubMed  Google Scholar 

  35. Maroti M, Ulff E, Wijma B. Quality of life before and 6 weeks after treatment in a dermatological outpatient treatment unit. J Eur Acad Dermatol Venereol. 2006;20(9):1081–5.

    Article  CAS  PubMed  Google Scholar 

  36. VanBeek M, Beach S, Braslow L, et al. Highlights from the report of the working group on “Core measures of the burden of skin diseases”. J Invest Dermatol. 2007;127:2701–6.

    Article  CAS  PubMed  Google Scholar 

  37. Masahiro S, Shigaku I, Yutaka I, et al. An investigation of quality of life (QOL) of pemphigus patients in Japan (first report). J Dermatol. 2000;110:283–8.

    Google Scholar 

  38. Terrab Z, Benchikhi H, Maaroufi A, et al. Quality of life and pemphigus. Ann Dermatol Venereol. 2005;132:321–8.

    Article  CAS  PubMed  Google Scholar 

  39. Mayrshofer F, Hertl M, Stinkraven R, Sticherling M, Pfeiffer C, Zillikens D, et al. Significant decrease in quality of life in patients with pemphigus vulgaris: results from the German bullous skin disease (BSD) study group. J Dtsch Dermatol Ges. 2005;3:431–5.

    Article  PubMed  Google Scholar 

  40. Kirtschig G, Middleton P, Bennett C, et al. Interventions for bullous pemphigoid. Cochrane Database Syst Rev. 2010;(10):CD002292.

    Google Scholar 

  41. Martin LK, Agero AL, Werth V, et al. Interventions for pemphigus vulgaris and pemphigus foliaceus. Cochrane Database Syst Rev. 2009;(1):CD006263.

    Google Scholar 

  42. Sampogna F, Picardi A, Chren MM, Melchi CF, Pasquini P, Masini C, et al. Association between poorer quality of life and psychiatric morbidity in patients with different dermatological conditions. Psychosom Med. 2004;66:620–4.

    Article  PubMed  Google Scholar 

  43. Sampogna F, Picardi A, Melchi C, et al. The impact of skin diseases on patients: comparing dermatologist’s opinions with research data collected on patients. Br J Dermatol. 2003;148:989–95.

    Article  CAS  PubMed  Google Scholar 

  44. Tabolli S, Mozzetta A, Antinone V, Alfani S, Cianchini G, Abeni D. The health impact of pemphigus vulgaris and pemphigus foliaceus assessed using the medical outcomes study 36-item short form health survey questionnaire. Br J Dermatol. 2008;158:1029–34.

    Article  CAS  PubMed  Google Scholar 

  45. Paradisi A, Sampogna F, Di Pietro C, et al. Quality-of-life assessment in patients with pemphigus using a minimum set of evaluation tools. J Am Acad Dermatol. 2009;60(2):261–9.

    Article  PubMed  Google Scholar 

  46. Darjani A, Ghanbari A, Sayadi Nejhad A. Comparison of the health-related quality of life of patients suffering from pemphigus with healthy people. J Guilan Univ Med Sci. 2008;17:1–9.

    Google Scholar 

  47. Timóteo P, Simões Marques L, Bertoncello D. Physiotherapy intervention promotes better quality of life for patients with pemphigus. Rev Soc Bras Med Trop. 2010;43:580–3.

    Article  PubMed  Google Scholar 

  48. Ghodsi SZ, Chams-Davatchi C, Daneshpazooh M, et al. Quality of life and psychological status of patients with pemphigus vulgaris using DLQI and general health questionnaires. J Dermatol. 2012;39(2):141–4.

    Article  PubMed  Google Scholar 

  49. Tabolli S, Pagliarello C, Paradisi A, Cianchini G, et al. Burden of disease during quiescent periods in patients with pemphigus. Br J Dermatol. 2014;170(5):1087–91.

    Article  CAS  PubMed  Google Scholar 

  50. Tabolli S, Sampogna F, Di Pietro C, et al. Quality of life in patients with epidermolysis bullosa. Br J Dermatol. 2009;161:869–77.

    Article  CAS  PubMed  Google Scholar 

  51. Paradisi A, Cianchini G, Lupi F, et al. QoL in patients with pemphigus receiving adjuvant therapy. Clin Exp Dermatol. 2012;37(6):626–30.

    Article  CAS  PubMed  Google Scholar 

  52. Hanna A, Sebaratnam D, Chee S, et al. A disease- specific quality of life instrument for autoimmune bullous diseases—the ABQOL. Aust J Dermatol. 2010;52 Suppl 1:27.

    Google Scholar 

  53. Hanna A, Sebaratnam D, Chee S, et al. The development of a disease-specific quality of life instrument for autoimmune bullous dermatoses: the ABQOL. J Invest Dermatol. 2011;131 Suppl 2:S33.

    Google Scholar 

  54. Sebaratnam D, Chee SN, Venugopal S, et al. Advances in the clinical assessment of autoimmune bullous disease: the development of a disease-specific quality of life instrument—the ABQOL. J Invest Dermatol. 2009;129:2908–23.

    Article  Google Scholar 

  55. Sebaratnam DF, McMillan JR, Werth VP, et al. Quality of life in patients with bullous dermatoses. Clin Dermatol. 2012;30:103–7.

    Article  PubMed  Google Scholar 

Download references

Author information

Authors and Affiliations

  1. 3rd Division of Dermatology, Center for Autoimmune Bullous Diseases, Istituto Dermopatico Dell’immacolata, IRCCS, Rome, Italy

    Giuseppe Cianchini MD

  2. Dermatology Unit, Ospedale Cristo Re, Rome, Italy

    Andrea Paradisi MD, PhD

  3. Department of Dermatology, St George Hospital, University of NSW Medical School, Sydney, NSW, Australia

    Dédée F. Murrell MA(Camb), BMBCh(Oxf), FAAD, MD, FACD, FRCP

Authors
  1. Giuseppe Cianchini MD
    View author publications

    You can also search for this author in PubMed Google Scholar

  2. Andrea Paradisi MD, PhD
    View author publications

    You can also search for this author in PubMed Google Scholar

  3. Dédée F. Murrell MA(Camb), BMBCh(Oxf), FAAD, MD, FACD, FRCP
    View author publications

    You can also search for this author in PubMed Google Scholar

Corresponding author

Correspondence to Giuseppe Cianchini MD .

Editor information

Editors and Affiliations

  1. Department of Dermatology, St George Hospital, University of New South Wales, Sydney, New South Wales, Australia

    Dédée F. Murrell

Rights and permissions

Reprints and permissions

Copyright information

© 2015 Springer-Verlag Berlin Heidelberg

About this chapter

Cite this chapter

Cianchini, G., Paradisi, A., Murrell, D.F. (2015). Quality of Life in Autoimmune Blistering Diseases. In: Murrell, D. (eds) Blistering Diseases. Springer, Berlin, Heidelberg. https://doi.org/10.1007/978-3-662-45698-9_67

Download citation

  • DOI: https://doi.org/10.1007/978-3-662-45698-9_67

  • Published:

  • Publisher Name: Springer, Berlin, Heidelberg

  • Print ISBN: 978-3-662-45697-2

  • Online ISBN: 978-3-662-45698-9

  • eBook Packages: MedicineMedicine (R0)

Publish with us

Policies and ethics

Search

Navigation