Quality of life measurement in alopecia areata. Position statement of the European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes
Publikation: Bidrag til tidsskrift › Tidsskriftartikel › Forskning › fagfællebedømt
New treatment options may lead to an increased interest in using reliable and sensitive instruments to assess health-related quality of life in people with alopecia areata (AA). The purpose of this paper is to present current knowledge about quality of life assessment in AA. The dermatology-specific Dermatology Life Quality Index (DLQI) was the most widely reported health-related quality of life instrument used in AA. Three AA-specific (Alopecia Areata Symptom Impact Scale, Alopecia Areata Quality of Life Index and Alopecia Areata Patients' Quality of Life) and three hair disease-specific instruments (Hairdex, Scalpdex and ‘hair-specific Skindex-29’) were identified with a range of content and validation characteristics: there is little evidence yet of the actual use of these measures in AA. Scalpdex is the best-validated hair disease-specific instrument. Further extensive validation is needed for all of the AA-specific instruments. The European Academy of Dermatology and Venereology Task Force on Quality of Life and Patient Oriented Outcomes recommends the use of the dermatology-specific DLQI questionnaire, hair disease-specific Scalpdex and the alopecia areata-specific instruments the Alopecia Areata Symptom Impact Scale or Alopecia Areata Quality of Life Index, despite the limited experience of their use. We hope that new treatment methods will be able to improve both clinical signs and health-related quality of life in patients with AA. In order to assess the outcomes of trials on these new treatment methods, it would be helpful when further development and validation of AA-specific instruments is being encouraged and also conducted.
Originalsprog | Engelsk |
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Tidsskrift | Journal of the European Academy of Dermatology and Venereology |
Vol/bind | 35 |
Udgave nummer | 8 |
Sider (fra-til) | 1614-1621 |
Antal sider | 8 |
ISSN | 0926-9959 |
DOI | |
Status | Udgivet - 2021 |
Bibliografisk note
Funding Information:
AYF is joint copyright owner of the DLQI, CDLQI, IDQoL, DFI and FDLQI and other quality of life measures: Cardiff University and AYF receive royalties from the use of these measures. AYF has received honoraria for advisory boards: Novartis, USB Pharma. GBEJ has received honoraria from AbbVie, Chemocentryx, Coloplast, Incyte, Inflarx, Kymera, Leo Pharma, Novartis and UCB for participation on advisory boards, and grants from AbbVie, Astra‐Zeneca, Inflarx, Janssen‐Cilag, Leo Pharma, Novartis, Regeneron and Sanofi, for participation as an investigator, and received speaker honoraria from AbbVie, Boehringer Ingelheim, Galderma and Novartis. He has also received unrestricted departmental grants from Leo Pharma and Novartis. CB has received speaker honoraria, research grants, awards and/or travel expenses from Celgene, Janssen‐Cilag, Kreussler, Lilly, Mapi Group, medi, Stiefel Laboratories, the EuroQol Group and Urgo. JCS served as a consultant and advisor for AbbVie, Leo Pharma, Novartis, Menlo, Pierre‐Fabre, Sienna Pharmaceuticals and Trevi and investigator for AbbVie, Amgen, Janssen, Merck, Novartis, Regeneron and Trevi. JCS served as a consultant and advisor for AbbVie, Leo Pharma, Novartis, Menlo, Pierre‐Fabre, Sienna Pharmaceuticals and Trevi, investigator for AbbVie, Amgen, Janssen, Merck, Novartis, Regeneron, Trevi, Boehringer Ingelheim, Galapagos, InflaRX, Pfizer, UCB, Incyte, Helm, Janssen, Menlo Therapeutics; Speaker for AbbVie, Janssen, Leo Pharma, Novartis, Sun‐Farm, Eli Lilly and Sanofi‐Genzyme. FS reports personal fees from AbbVie, outside the submitted work. CS reports non‐financial support from Leo Pharma, grants from CeraVe International, outside the submitted work. AB reports personal fees from AbbVie, personal fees from Almirall, personal fees from Galderma, personal fees from Eli Lilly, personal fees from Janssen, personal fees from Leo Pharma, personal fees from Novartis, personal fees from Sanofi, personal fees from UCB, outside the submitted work. Other authors reported no conflicts of interests.
Publisher Copyright:
© 2021 European Academy of Dermatology and Venereology.
ID: 305535226