Patient Perspectives of the Social, Emotional and Functional Impact of Alopecia Areata: A Systematic Literature Review

Introduction Alopecia areata (AA) is a chronic, autoimmune disease of hair loss, which can significantly affect the emotional and psychological well-being of patients. A systematic literature review was conducted to better understand the burden of AA from the patient perspective. Methods Embase, MEDLINE and Cochrane databases were searched for published studies (2008-2018) reporting on assessments of health-related quality of life (HRQoL) for patients with AA. Qualitative, and quantitative data were collected. Results The review included 37 studies encompassing a range of clinical outcome assessment (COA) tools. None of the COA tools were specific for AA, and only one study used the Hairdex scale, which was designed to evaluate HRQoL in patients with disorders of the hair and scalp. All studies reported substantial impact on HRQoL due to AA, both overall and in domains related to personality (i.e. temperament and character), emotions and social functioning. Acute stress was also noted, and several studies identified lack of emotional awareness (alexithymia) in 23-50% of the patients with AA. Conclusions Although it is well-established that patients with AA experience anxiety and depression, they also experience a decrease in HRQoL in many other areas, including personality, emotions, behaviors and social functioning, and these changes may be accompanied by acute stress and alexithymia. There is a need to achieve consensus on a core set of measures for AA and to develop and validate AA-specific measurement tools for use in future studies, to attain a clearer understanding of the impact of AA on patients. Plain Language Summary Alopecia areata (AA) is a disease in which a person's immune system attacks their hair follicles, from which hairs grow, causing hair loss. Studies have shown that people with AA may have a lower quality of life, and studies have reported higher rates of depression and anxiety in people with AA than in people without AA. Study design: We reviewed published studies to better understand how AA affected people socially, emotionally and in their day-to-day functioning. We also looked at how healthcare providers measured these social, emotional and day-to-day effects on people with AA. Our review included 37 published studies that used several evaluation tools to measure the impacts of AA. These included a variety of questionnaires that were answered by people with AA. Results: The studies reported that AA negatively affected the personality, emotions, behaviors and/or social functioning of many people with AA. However, none of the evaluation tools that were used in those studies were specific for AA, and most of the evaluation tools did not include questions about the hair or scalp. Conclusions: We recommend that a group of people familiar with AA (practitioners, researchers and patients) work together to develop an evaluation tool that is designed specifically for people with AA. This evaluation tool can then be used in future studies to better understand how AA affects people socially, emotionally and in their day-to-day functioning.