Research

From our 2022 Research Pots, Alopecia UK awarded research funding to Dr Fabio Zucchelli, to study which aspects of psychological support are important to people with alopecia areata (AA) and how people with AA can best be supported. From this research, he has developed a sets of recommendations for the professionals and peer supporters that people with AA come into contact with. The research project has now finished, and we caught up with Fabio to hear what he has learned. 

Why did you carry out this research?

We knew from the alopecia community that adjusting to a diagnosis of alopecia areata (AA) can be incredibly tough. Certainly not for everyone, but for enough people to make it a common challenge that requires support. We also know that people with AA often don’t feel they get the support they need to adjust to life with the condition. In previous research we’ve done with Alopecia UK, many people with AA told us that consultations with GPs and dermatologists left them feeling dismissed, having the message “it’s only hair” conveyed to them. While others spoke of how much it helped receiving empathy and validation of how life-changing it can be from their doctors. So medical professionals definitely play a part in the adjustment process – whether positive or negative.

There’s also quite a wide range of professionals and volunteers with whom people with AA come into contact. There are mental health professionals, whether through the NHS or privately. There are trichologists, who provide holistic treatment and information. Then there are also trained peers who offer group peer support through Alopecia UK. And there are no rigorously developed guidelines or recommendations for any of these care providers in how best to help promote wellbeing in people with AA. So that was the purpose of our study.

How did you carry out this study?

We used an approach called the Delphi method. It’s a way of forming a consensus, or general agreement, of what is important for any given purpose. In our case, we wanted to know what were considered the most important ‘ingredients’ to promote wellbeing in people with AA. And you have to ask the right people, to draw on the most relevant expertise. So we had two types of experts: the care providers, or ‘experts by support role’; so the GPs, dermatologists, mental health professionals, trichologists and trained peers who have experience of supporting people with AA. And importantly, experts by experience: people with AA who’ve found it hard to adjust and learned a lot through the process of adjusting and have received help from care providers. We recruited 52 experts over the course of the study: 29 experts by experience and 23 experts by support role.

We went through three rounds. First, we ran an online survey in which we asked people to tell perspective of having supported many people with AA, or from having gone through the process themselves. We analysed their answers all together to find the common themes, and turned these into potential recommendations to be included in the final recommendations.

Then we presented the experts with the recommendations and asked them to rate their importance, to narrow down the longlist into a shortlist. Finally, to tailor the recommendations to each support role, we asked care providers from the different role to tell us which items were relevant to their own role. And at each stage, we asked experts to suggest different wording or emphasis of the recommendations.

What did you find?

Perhaps the headline story is that over the course of the three rounds, the single recommendation – out of 24 – that is most important is validating and exploring the emotional impact that AA can have on the people it affects. By validating, I mean care providers making it clear to people that their concerns are real and matter. And actually, this may be enough for medical professionals to make a real positive difference to how someone goes away from their consultation and how they feel about their situation. In round 1, over 80% of experts described this need, it was ranked as most important within its category in round 2, and it was kept in all four versions of recommendations in round 3.

Other recommendations that were kept in all four versions were “Respect and work with individuals' chosen coping strategies (where no clear harm is caused)”, and “There should be a holistic, multi-support-role & multisector approach to psychological support”. So these bring home the importance of care providers working at the individual’s pace and following their lead to a point, and for the need for all care providers to be thinking as a team, collectively responsible not just for the physical wellbeing of people with AA, but also their mental wellbeing.

What’s next for this work?

Now comes the important part of actually turning these recommendations into reality. From the findings, we’ve created tailored recommendations for each role: medical professionals, mental health professionals, trained peers, and trichologists.

As the project lead, I’ll be sharing the findings with care providers via professional organisations and networks, like the British Hair and Nail Society and others. And speaking at conferences attended by these groups. Alopecia UK are also great at sharing best practice, and can also host the recommendations online so that care providers can access the information that’s relevant to them. We need to all get this information out there!

To access the PowerPoint presentation slide decks for each role, please use the links below. Some slides contain further instructions to go with the recommendations in the 'notes' section, which can be expanded at the bottom. 

Recommendations for GPs and Dermatologists

Recommendations for Mental Health Professionals

Recommendations for Peer Supporters

Recommendations for Trichologists

Fabio would like to thank all the experts for contributing to the study, including those who contributed as study advisors. In particular, he’d like to thank Dr Kerry Montgomery, formerly Psychological Wellbeing Lead at Alopecia UK, for her involvement.