Islam, N., Leung, P. S., Huntley, A. C., & Gershwin, M. E. (2015 Feb). The autoimmune basis of alopecia areata: a comprehensive review. Autoimmunity Reviews., 14(2), 81–89.
Benigno, M., Anastassopoulos, K. P., Mostaghimi, A., Udall, M., Daniel, S. R., Cappelleri, J. C., et al. (2020). A Large Cross-Sectional Survey Study of the Prevalence of Alopecia Areata in the United States. Clinical, Cosmetic and Investigational Dermatology., 13, 259.
Safavi, K. H., Muller, S. A., Suman, V. J., Moshell, A. N., & Melton III, L. J. (1995). Incidence of alopecia areata in Olmsted County, Minnesota, 1975 through 1989. Mayo Clinical Proceedings., 70(7), 628-633.
Mirzoyev, S. A., Schrum, A. G., Davis, M. D., & Torgerson, R. R. (2014). Lifetime incidence risk of Alopecia Areata estimated at 2.1 percent by Rochester Epidemiology Project, 1990–2009. The Journal of Investigative Dermatology., 134(4), 1141.
Lundin, M., Chawa, S., Sachdev, A., Bhanusali, D., Seiffert-Sinha, K., & Sinha, A. A. (2014). Gender differences in alopecia areata. Journal of Drugs in Dermatology., 13(4), 409.
Hordinsky, M., & Donati, A. (2014). Alopecia areata: An evidence-based treatment update. American Journal of Clinical Dermatology., 15(3), 231–246.
Abedini, R., Hallaji, Z., Lajevardi, V., Nasimi, M., Karimi Khaledi, M., & Tohidinik, H. R. (2018 Jun). Quality of life in mild and severe alopecia areata patients. International Journal of Women's Dermatology., 4(2), 91–94.
Liu, L. Y., King, B. A., & Craiglow, B. G. (2016). Health-related quality of life (HRQoL) among patients with alopecia areata (AA): A systematic review. Journal of the American Academy of Dermatology., 75(4), 806–812.
Al-Mutairi, N., & Eldin, O. N. (2011). Clinical profile and impact on quality of life: Seven years experience with patients of alopecia areata. Indian Journal of Dermatology, Venereology, and Leprology., 77(4), 489-493.
de Hollanda, T. R., Sodré, C. T., Brasil, M. A., & Ramos-e-Silva, M. (2014). Quality of life in alopecia areata: A case-control study. International Journal of Trichology., 6(1), 8-12.
Ghajarzadeh, M., Ghiasi, M., & Kheirkhah, S. (2011). Depression and quality of life in Iranian patients with alopecia Areata. Iranian Journal of Dermatology., 14(4), 140–143.
Masmoudi, J., Sellami, R., Ouali, U., Mnif, L., Feki, I., Amouri, M., et al. (2013). Quality of life in alopecia areata: A sample of Tunisian patients. Dermatology Research and Practice., Article ID 983804.
Qi, S., Xu, F., Sheng, Y., & Yang, Q. (2015). Assessing quality of life in alopecia areata patients in China. Psychology, Health & Medicine., 20(1), 97–102.
Christensen, T., Yang, J. S., & Castelo-Soccio, L. (2017). Bullying and quality of life in pediatric alopecia areata. Skin Appendage Disorders., 3(3), 115–118.
Liu, L. Y., King, B. A., & Craiglow, B. G. (2018). Alopecia areata is associated with impaired health-related quality of life: A survey of affected adults and children and their families. Journal of the American Academy of Dermatology., 79(3), 556–558 e1.
Article
Google Scholar
Putterman, E., Patel, D. P., Andrade, G., Harfmann, K. L., Hogeling, M., Cheng, C. E., et al. (2019). Severity of disease and quality of life in parents of children with alopecia areata, totalis, and universalis: A prospective, cross-sectional study. Journal of the American Academy of Dermatology., 80(5), 1389-1394.
Rencz, F., Gulacsi, L., Pentek, M., Wikonkal, N., Baji, P., & Brodszky, V. (2016). Alopecia areata and health-related quality of life: A systematic review and meta-analysis. British Journal of Dermatology., 175(3), 561–571.
FDA. The Voice of the Patient: Alopecia Areata. 2018. Available from: https://www.fda.gov/media/112100/download.
Google Scholar
Wolf, J. J., & Hudson, B. P. (2018). Alopecia Areata: Factors that impact children and adolescents. Journal of Adolescent Research., 34(3), 282-301.
Davis, D. S., & Callender, V. D. (2018). Review of quality of life studies in women with alopecia. International Journal of Women's Dermatology., 4(1), 18–22.
Rafique, R., & Hunt, N. (2015). Experiences and coping behaviours of adolescents in Pakistan with alopecia areata: An interpretative phenomenological analysis. International Journal of Qualitative Studies on Health and Well-being., 10, 26039.
Davey, L., Clarke, V., & Jenkinson, E. (2019). Living with alopecia areata: An online qualitative survey study. British Journal of Dermatology., 180(6), 1377–1389.
Welsh, N., & Guy, A. (2009). The lived experience of alopecia areata: a qualitative study. Body Image., 6(3), 194–200.
Korta, D. Z., Christiano, A. M., Bergfeld, W., Duvic, M., Ellison, A., Fu, J., et al. (2018). Alopecia areata is a medical disease. Journal of the American Academy of Dermatology., 78(4), 832–834.
Article
Google Scholar
Chren, M. M. (2012). The Skindex instruments to measure the effects of skin disease on quality of life. Dermatologic Clinics., 30(2), 231–236 xiii.
Chren, M.-M., Lasek, R. J., Quinn, L. M., Mostow, E. N., & Zyzanski, S. J. (1996). Skindex, a quality-of-life measure for patients with skin disease: Reliability, validity, and responsiveness. Journal of Investigative Dermatology., 107(5), 707–713.
Wyrwich, K., Kitchen, H., Knight, S., Aldhouse, N., Macey, J., Nunes, F., et al. (2020). Development of the scalp hair assessment PRO™ measure for alopecia areata. British Journal of Dermatology., https://doi.org/10.1111/bjd.19024. Online ahead of print.
Wyrwich, K. W., Kitchen, H., Knight, S., Aldhouse, N. V. J., Macey, J., Nunes, F., et al. (2020). Development of clinician-reported outcome (ClinRO) and patient-reported outcome (PRO) measures for eyebrow, eyelash and nail assessment in alopecia areata. American Journal of Clinical Dermatology., https://doi.org/10.1007/s40257-020-00545-9. Online ahead of print.
Braun, V., & Clarke, V. (2006). Using thematic analysis in psychology. Qualitative Research in Psychology., 3(2), 77–101.
Guest, G., MacQueen, K. M., & Namey, E. E. (2011). Applied thematic analysis: Sage.
Google Scholar
Fusch, P. I., & Ness, L. R. (2015). Are we there yet? Data saturation in qualitative research. The Qualitative Report., 20(9), 1408–1416.
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 1--eliciting concepts for a new PRO instrument. Value in Health., 14(8), 967–977.
Patrick, D. L., Burke, L. B., Gwaltney, C. J., Leidy, N. K., Martin, M. L., Molsen, E., et al. (2011). Content validity--establishing and reporting the evidence in newly developed patient-reported outcomes (PRO) instruments for medical product evaluation: ISPOR PRO good research practices task force report: Part 2--assessing respondent understanding. Value in Health., 14(8), 978–988.
Turner-Bowker, D. M., Lamoureux, R. E., Stokes, J., Litcher-Kelly, L., Galipeau, N., Yaworsky, A., et al. (2018). Informing a priori sample size estimation in qualitative concept elicitation interview studies for clinical outcome assessment (COA) instrument development. Value in Health., 21(7), 839–842.
Willis, G. B. (2004). Cognitive interviewing: A tool for improving questionnaire design: Sage publications.
Google Scholar
Toussi, A., Barton, V. R., Le, S. T., Agbai, O. N., & Kiuru, M. (2020). Psychosocial and psychiatric comorbidities and health-related quality of life in alopecia areata: a systematic review. Journal of the American Academy of Dermatology, https://doi.org/10.1016/j.jaad.2020.06.047. In Press, Journal Pre-proof.
Endo, Y., Miyachi, Y., & Arakawa, A. (2012). Development of a disease-specific instrument to measure quality of life in patients with alopecia areata. European Journal of Dermatology., 22(4), 531–536.
Article
Google Scholar
Fabbrocini, G., Panariello, L., De Vita, V., Vincenzi, C., Lauro, C., Nappo, D., et al. (2013). Quality of life in alopecia areata: A disease-specific questionnaire. Journal of the European Academy of Dermatology and Venereology., 27(3), e276–ee81.
Article
CAS
Google Scholar
Mendoza, T. R., Osei, J. S., Shi, Q., & Duvic, M. (2013). Development of the alopecia areata symptom impact scale. Journal of Investigative Dermatology Symposium Proceedings, 16 (1), S51–S52.
Chren, M.-M., Lasek, R. J., Quinn, L. M., & Covinsky, K. E. (1997). Convergent and discriminant validity of a generic and a disease-specific instrument to measure quality of life in patients with skin disease. Journal of Investigative Dermatology., 108(1), 103–107.
Chren, M.-M., Lasek, R. J., Flocke, S. A., & Zyzanski, S. J. (1997). Improved discriminative and evaluative capability of a refined version of Skindex, a quality-of-life instrument for patients with skin diseases. Archives of Dermatology., 133(11), 1433–1440.
Chren, M.-M., Lasek, R. J., Sahay, A. P., & Sands, L. P. (2001). Measurement properties of Skindex-16: A brief quality-of-life measure for patients with skin diseases. Journal of Cutaneous Medicine and Surgery., 5(2), 105–110.
Wyrwich, K. W., Kitchen, H., Knight, S., Aldhouse, N. V., Macey, J., Nunes, F. P., et al. (2020). The alopecia areata investigator global assessment scale: A measure for evaluating clinically meaningful success in clinical trials. British Journal of Dermatology., https://doi.org/10.1111/bjd.18883. Online ahead of print.