Assistant psychologist, Áine Mahon, summarises her Health Psychology Masters dissertation completed at Ulster University, which quantitatively assessed the impact of alopecia on emotional, mental and physical wellbeing amongst adults. The study demonstrates the importance of addressing the process of providing care and support for those experiencing alopecia. Áine currently works in The Children's Clinic, a child neurodiversity and disability clinic in Dublin. Áine has a particular interest in the impact of long-term conditions on quality of life, and the development of mental health interventions to improve health and wellbeing in children.
Highlights:
· Alopecia is largely treated as a physical health disease and the wider impact on an individual’s life is neglected.
· Alopecia has a significant impact on quality of life, self-esteem and different areas of wellbeing, comprising of physical, emotional and mental.
· There is a need for greater emphasis on the emotional and mental wellbeing of people with Alopecia, starting with education and training for healthcare professionals.
Alopecia is an autoimmune disease that causes the immune system to attack the hair follicles thus leading to hair fall out. As an umbrella term, there are multiple forms of alopecia such as androgenic alopecia, alopecia areata, alopecia totalis and traction alopecia. All forms of the condition cause one’s hair to fall out in some manner, but the focus of this research is alopecia areata which causes patchy baldness. Within the medical field, Alopecia areatais not viewed as a serious condition as it does not cause any pain and is not life-threatening. However, studies have found that it affects one’s quality of life (QoL) in many ways1. Losing hair from a particular body part could result in loss of a job or giving up a hobby. The option of wearing a wig or toupee to cover bald patches is possible, but this can be a source of irritation, itching and perspiration. There is also the difficult decision of who to tell about the condition; confiding in work colleagues or friends can be difficult and stressful.
Although individual reactions to the diagnosis of the alopecia areata can vary, common emotions experienced by most people include grief, anxiety, fear, loneliness, embarrassment and anger2. There can also be an element of guilt for parents, as they may pass this condition onto their children. Some individuals may isolate themselves due to concern about their altered appearance and fitting in to society. The onset of alopecia areata has been described as emotionally devastating and the cause of psychological distress. Evidently, this can affect one’s self-esteem and have a negative impact on QoL.
At present, there are no studies of quality of life and stigmatization in adults with alopecia areata within an Irish context. The current study was designed to assess the extent of stigmatization and how it affects QoL, including whether higher levels of stigma predicted lower levels of quality of life. Gender differences were also assessed to determine whether experiences of alopecia areata differ. Understanding how stigmatisation and QoL are linked in alopecia areata can inform the development of future psychological interventions.
What did the study involve?
A survey was conducted with the support of Alopecia Ireland, a national organisation that support those with alopecia areata. The online survey was advertised on the Alopecia Ireland Facebook group and involved completing three questionnaires. The three questionnaires included a short demographic questionnaire, the Alopecia Areata Symptom Impact Scale (AASIS) and the Short-Form Questionnaire on Experiences with Skin Diseases (QES). The AASSIS collected data on the impact of alopecia areata, and emotional, mental and physical wellbeing. The QES measures low self-esteem, concealment, experienced refusal and composure. 75 adults (24 males, 51 females) between the ages of 18 to 68 with alopecia areata completed the survey, all of which had alopecia areata for at least one year.
What did the study find?
Primarily, alopecia has a negative effect on daily functioning, including work, enjoyment of life, interaction with others, daily activities, and sexual relations (as seen in Figure 1). There was also a substantial negative impact on QoL, emotional wellbeing and mental wellbeing due to the patients’ condition (see Figure 2). All of the scores on the AASIS subscale were within the ‘high score’ range, highlighting the extent of the impact on wellbeing.
The results further indicate that more alopecia symptoms are associated with higher rates of concealment, experienced refusal, and lower self-esteem. Further, there were significant associations between levels of concealment, low self-esteem, and experience refusal.
The second aim of the study was to examine whether any gender differences were present regarding the impact of alopecia areata and dimensions of stigmatization. It was expected that women would achieve lower scores3. However, males and females scored within a similar realm across all scores. This result was not expected, as previous studies reported that women tend to struggle a lot more than men in concealing and dealing with their condition emotionally4.
The third aim of this study was to examine the predictive power of stigmatization on quality of life. However, the results illustrated that stigmatization did not significantly predict quality of life. This is not in line with previous research, which had found that the negative influence of skin diseases has a significant effect on QoL5.
Limitations of the study are noted. Mainly, the use of self-report measures, which may represent a vague insight into the actual experiences of an adult with alopecia. It would be advantageous for future research to examine quality of life and stigmatization of patients with alopecia on a larger scale. Due to this study’s limited sample size of 75, generalisation is limited, and the data should be viewed with caution but encourage further investigation. A gender imbalance was also noted as the research sample was female-dominated, with 51 females and 24 males.
Conclusion
The results highlight the largely negative impact that alopecia can have on mental wellbeing and daily functioning among both women and men. The results of this study suggest matters that need to be improved by healthcare professionals to address the emotional and physical aspects of alopecia.
Implications of the research
Currently, many healthcare services focus on treating the symptoms of alopecia with concealment, medication and surgery. There is limited emphasis placed on the importance of mental and emotional well-being, even though there is a plethora of research demonstrating the significant effect of this condition on overall wellbeing and daily functioning6. It is vital that healthcare professionals are provided with sufficient training and education on the potential impact on one’s quality of life relating to hair loss. Critically, this study could inform the design and development of training for clinicians to broaden their understanding of this life-long condition. A deeper understanding of the impact of alopecia will promote self-esteem, improved mental health and a better quality of life for those living with alopecia.
References:
1 Zhang, M., & Zhang, N. (2017). Quality of life assessment in patients with alopecia areata and androgenetic alopecia in the People’s Republic of China. Patient preference and adherence, 11, 151.
2 Hunt, N., & McHale, S. (2005). The psychological impact of alopecia. British Medical Journal, 331(7522), 951–953.
3 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).