Dr Kerry Montgomery and Dr Fabio Zucchelli

In 2022 Alopecia UK, in collaboration with colleagues at the Centre for Appearance Research at the University of the West of England, received funding from Pfizer to investigate the socioeconomic burden of alopecia areata. You can read more about the funding here.

The research aimed to investigate the financial, psychological, and social impact of living with alopecia areata (AA), exploring factors including the costs of products and services to manage AA, access to healthcare, quality of life, psychological well-being, and the effect of AA on employment opportunities. The main objective of the study was to understand the true costs associated with AA. In this blog post, we aim to highlight the key findings from the study. 

The online survey

We decided an online survey was the best way to collect data. To ensure the survey questions were relevant we recruited a group of people with AA to form a Research Advisory Group. These individuals provided valuable insights and feedback to shape the survey questions. After finalising the survey we launched in online in 2022. We asked questions about income and expenditure on products and services, access to private and NHS health care, psychological wellbeing and work and education.

In total 829 people completed the online survey, which we think is one of the biggest response rates for such a survey. Thanks to everyone who completed the survey.

What were the main findings?

  1. Spending on products and services

The minimum reported spend on products and services was £4.60 and the maximum was £21,300 so you can see there was a huge variation in spending. Because of this variation we looked at the median spend to give a more conservative average of the costs. This was £840 a year.

Wigs were the most purchased product to manage AA – with a median spend of £700, but this was mostly women. Men were more likely to purchase hats.

Vitamins and supplements were the third most common product purchased by men and women.

The costliest products and services were wigs for women (£700 per year) and private dermatology appointments for men (£550 per year).

Other types of spending reported included eyelash and eyebrow products, prescription costs, costs for private mental health support, and travel to appointments.

The fact that the range of spending was between £4.60 and £21,300 highlights that the financial burden of AA is not uniform and can vary significantly for different people. A median spend of £840 is particularly relevant in the context of the cost of living crisis as it represents a third of the cost of the average energy bill and more than the cost of a child’s school meals for a year. Over a quarter of people spent more than 8.5% of their disposable income (income after tax but before housing and other expenses) on products and services. Only a quarter of people said they could easily afford to pay for products and services. Many individuals had to use credit cards or borrow money from savings of family to cover the costs.

In terms of the financial burden of AA we found that women, people of Asian ethnicity, those who report worse symptoms of AA, and those who had less disposable income spent a higher percentage of their disposable income on products and services to manage AA.

  1. Impact on work

21% of participants reported being signed off work due to their AA. This indicates that for some individuals, AA had a substantial effect on their wellbeing. We found that on average, AA had a minimal impact on work productivity over the proceeding seven days for most participants. This implies that many individuals managed to maintain their productivity levels despite dealing with AA. However, the study did find that individuals who were more recently diagnosed with AA reported lower productivity levels which suggests people felt their AA affected their ability to be as productive as usual at work. 

  1. Wellbeing

Our findings show that nearly 70% of participants experienced depression and nearly 65% experienced anxiety ranging from mild to severe. We also found that that younger age and greater AA severity were risk factors for anxiety and depression. Our findings also indicate that there were no significant differences between men and women in terms of distress suggesting the emotional impact of AA can affect individuals of all genders equally, but potentially in different ways.

How will the findings be used to help people with alopecia areata?

Doing research is one thing, the most important part to us is making sure that the findings are useful and can help people with AA. Our findings show that products and services are costly but valued as they help to manage the impact of hair loss. The financial burden of AA is on the individual as many of the products and services are unavailable via the NHS. The findings show that for some people it is a struggle to afford products and services, and this could get worse as the cost-of-living crisis continues which will undoubtedly have an impact on wellbeing. The findings also highlight groups for whom the financial burden is higher, and who are at higher risk of experiencing depression and anxiety – this is something that health care providers need to be aware of.

The findings have been presented at conferences to highlight the impact of AA to professionals in the hope of improving the experiences in health care for people with AA. We hope the findings of this study will be considered by health providers, commissioners and policy makers when designing services to support the wellbeing of people with AA.

The other risk factors identified in the findings also require consideration by health providers, commissioners, and policy makers when designing services to support the wellbeing of people living with AA.

The summary of key findings are also available in this infographic

The results were published in the Journal Skin Health and Disease in October 2023.