Update August 2023: This study is now finished and Dr Kerry Montgomery and Dr Fabio Zucchelli have described the results in this blog. 

Update October 2023: The results were published in the Journal Skin Health and Disease, which can be read open-access here. 

---

Alopecia UK funds invested:  £55,026 from a grant by Pfizer

When: Jan 2022 - Dec 2022

Project type:  Sociology, Psychology

Project Lead:  Dr Kerry Montgomery and Dr Fabio Zucchelli

Collaborators:  Dr Matthew Harries, Prof Andrew Messenger

Length of project: 1 year

Research Institute:  Alopecia UK in collaboration with the Centre for Appearance Research, University of the West of England Bristol

Conditions to be studied:  Alopecia areata

Funds being used for:  Staff salary, consumables and conference costs

Aim of the Project:

To understand the socioeconomic burden of alopecia areata on those affected by the condition

What is the project about:

Current epidemiological data suggests there is a 1.7 – 2.1% lifetime risk for alopecia areata and it is estimated that 1 or 2 in every 1,000 people currently has AA (Pratt, et al. 2017; Harries, et al. 2021). Research suggests that around 66% of people with AA experience generalised anxiety disorder or depression, with levels of social anxiety reported to be around 47% (Montgomery, et al. 2017). In a survey conducted by Alopecia UK, 46% of those surveyed were dissatisfied with the level of care and advice provided by their GP, 36% were dissatisfied with the level of care and advice at their dermatology appointment and 72% were dissatisfied with psychological support provided by the National Health Service.  

Costs of headwear can be significant and Alopecia UK is actively involved in advocating for improved wig provision in the NHS for those with hair loss to reduce the costs to the individual. For many people wigs play a crucial role in helping them feel able to go to work or education, have relationships and socialise and worries about affording wigs has a significant impact on mood. It is widely acknowledged that AA has a significant impact on quality of life and findings suggest patient outcomes are poor in terms of satisfaction with services received; however, no research to date has examined the socio-economic impact of AA on the individual.

How will the research be done:

We aim to develop an online survey to measure the psychosocial impact of alopecia and the socio-economic costs. The first part of the study will involve recruiting a research advisory group who can help us understand the costs involved in managing AA. The research advisory group will also provide feedback on participant information and the survey development to ensure it is fit for purpose. We will ask participants what products and/or services they spend money on to manage their alopecia, how they pay for the products/services, and what impact this has on their finances. We will use a range of standardised questionnaires to measure wellbeing (e.g., anxiety and depression) and the impact of AA on attendance at work/education and productivity. We aim to recruit over 700 people affected by AA to complete the survey.

We will be using the survey findings to help us discuss the socioeconomic impact of alopecia to help raise awareness, improve support resources and highlight the need for greater research and treatment options for those affected.

Who is leading the project:

Dr Kerry Montgomery is the Psychological Wellbeing Lead at Alopecia UK. Before Alopecia UK, Kerry worked in mental health for over 15 years. Kerry worked in the NHS Improving Access to Psychological Therapies Service as a Psychological Wellbeing Practitioner for 10 years before coming to work for Alopecia UK. As well as her clinical work, Kerry completed her PhD in 2017 which focused on the psychological impact of skin conditions (including alopecia) and interventions to support people and improve wellbeing. Kerry is a Chartered Psychologist with the British Psychological Society and has spoken about her research internationally.

Dr Fabio Zucchelli is a Research Fellow at the University of the West of England in Bristol. Since 2016, he has worked at the Centre for Appearance Research, and has conducted multiple studies on the psychological impact of numerous conditions that affect appearance. Since 2020 he has worked on multiple projects specifically on alopecia. In collaboration with Alopecia UK, he analysed and reported a survey of individuals with alopecia on their experiences of NHS services. He also collaborated with Alopecia UK to secure funding for a 2-year project from the Vocational Training Charitable Trust Foundation, investigating 200 men’s experiences of alopecia.