A qualitative exploration of the experiences of adolescents with alopecia areata and their messages for healthcare professionals

Dear Editor, Alopecia areata (AA) is an autoimmune disorder characterized by nonscarring hair loss, which affects nearly 2% of the population, with 60% experiencing their first episode of hair loss before the age of 20 years.1, 2 The pattern of hair loss is highly variable and unpredictable, from well‐defined patches to total hair loss. AA can have a transformative effect on an individual, and has significant psychological consequences for many, with high levels of anxiety and depression well documented.3, 4 These effects can be particularly profound in adolescence,5 with AA an additional challenge affecting appearance during a critical period for self‐image. We conducted a secondary inductive thematic analysis of 21 in‐depth semistructured interviews with young people with AA.6 Eighteen participants were female and three male. The mean age was 21·5 years (range 14–23) and the mean length of time since diagnosis was 8·4 years. Seventeen participants identified as white British, and one participant each identified as of the following: Asian/white, Black Caribbean, European and Indian. Ethical approval was obtained by Berkshire NRES Committee South Central. All participants gave informed consent before taking part and gave consent for secondary analysis. The University of Oxford, which holds the copyright for the interviews, has given data sharing permission to enable this secondary analysis of the interview data. Our analysis identified the following core emotional and psychological themes. (i) Isolation and community: most participants made reference to ‘alopecia as a hidden problem’ and ‘felt very alone’ when diagnosed. However, many found tremendous support in online forums and support groups, in which they could share experiences with other people with AA. (ii) Self‐consciousness: participants cited feeling ‘paranoid’ about being stared at, sometimes to the extent that they could not leave the house. (iii) ‘It’s not just hair’: the concept of AA being far more than hair loss was prominent throughout; some felt they lost ‘their identity’ and some young women felt it had impacted their ‘femininity’. Societal connotations of hair loss also frequently posed a challenge, with many people presuming young people with AA had cancer. (iv) Unpredictability: some participants described ‘not knowing’ whether their hair would grow back as the most difficult part of their experience, and were ‘living in fear’ that their hair would fall out again even after experiencing regrowth. One individual described how having alopecia felt like ‘you’re harnessed into that rollercoaster and no matter what, it will just go up and down and stop and start whenever’. Some individuals recounted shaving off their hair as a way of taking back control in their tumultuous disease course. Importantly, there was a notable heterogeneity among participant responses. Although the majority felt that their alopecia had been tremendously difficult, others felt that it had made them a better and/or more unique person. A conflict in perspectives was sometimes observed within individual participant accounts, likely reflecting both the ongoing ‘alopecia journey’ and adolescence as a time of major change. An awareness of these complex psychological themes is crucial to the provision of high‐quality, developmentally appropriate care for adolescents with AA. Via analysis of the whole transcripts, we identified two overarching messages for healthcare professionals managing adolescents with AA: (i) give more information and (ii) address the emotional impact (see Table 1 for illustrative data extracts). These themes intersect; the failure to address a patient’s informational needs reflected a lack of understanding of emotional impact in certain cases. Some individuals described how this could impact on treatment options. One participant recounted that ‘they didn’t give me any information on wigs or anything which was quite tough, because we didn’t realize that I was entitled to free wigs.’ Although the British Association of Dermatologists guidelines for management of AA recommend considering psychological support,7 our participants frequently cited a failure of their general practitioner or dermatologist to do so, with ‘so much focus on scientific side…[they] don’t really understand the social impact’. This is echoed in existing literature; in a questionnaire‐based study investigating the effect of alopecia on quality of life, 40% of respondents reported feeling that their doctors had been either ‘insensitive’, ‘dismissive’ or ‘unsupportive’.8 Illustrative data extracts for key ‘messages to healthcare professionals’ themes Illustrative data extracts for key ‘messages to healthcare professionals’ themes There are likely several reasons for the failure of many healthcare professionals to address the emotional impact of AA, including consultation time constraints, but it is essential. For many young people, alopecia is their first experience of a condition for which a cure cannot be offered. The experience of navigating health services and adjustment to a chronic condition may be overwhelming, while also dealing with the conspicuous nature of alopecia during a critical time in development of self. We suggest that increased awareness of the emotional issues patients might be experiencing, combined with an appreciation of the valuable role of appropriate online support and information, will better equip healthcare professionals. Our analysis provides insight into the complexity and challenges of the experiences of young people living with AA, and provides patient voices in informing healthcare delivery. We have distilled two simple but crucial messages for professionals managing adolescents with AA. We would like to thank the Medical Sociology & Health Experiences Research Group (University of Oxford) for data sharing, and the young people who took part in the original data collection project. Funding sources: This study was supported by Oxfordshire Health Services Research Committee (OHSRC), part of Oxford Hospitals Charity. Data collection was funded by National Institute for Health Research under the Research for Patient Benefit programme (PB‐PG‐0213‐30006). Conflicts of interest: The authors declare they have no conflicts of interest.