EB insights study

The insights from our most detailed EB patient study ever will help shape everything we do at DEBRA, including our future lobbying campaigns.

Download the EB insight study 2023  Download the summary report

 

The EB insights study identified 7 key issues that the EB community told us had the greatest impact on them. The summary report highlights the key findings and the actions we will take to:

1. improve awareness and understanding of all types of EB including amongst GPs and dermatologists and encourage more referrals to EB specialist healthcare centres;
2. address the geographical imbalance of EB specialist healthcare;
3. provide financial support due to the cost-of-living crisis making the burden of living with EB harder;
4. improve the current mental health provision available through the NHS for people living with EB and their carers;
5. enable EB patients/carers to get treatment recommendations from other EB patients;
6. make DEBRA funding for research towards treatments the top priority;
7. increase interaction for EB patients with our Community Support Team.

The 2023 EB Insight Study is our most comprehensive patient-centric research to-date, providing us with a baseline of invaluable data from those who know and understand epidermolysis bullosa (EB) best: the EB community.

Over 200 people with different types of EB, over 100 carers, 50 dermatologists, and 100 GPs contributed to the study. Hearing the voices of those with and impacted by EB is critical to our understanding of this debilitating condition.

Responses to the study came from across the UK, from a split of genders and across a range of ages. This diversity of thought confirms and informs our direction of travel in our fight against EB, leaving no-one with EB behind. Further, it will underpin a step-change in our planning and our actions. For example, the responses will guide our frontline services to ensure they are in line with the needs of the EB community and focus our research on the areas that matter most to EB patients.

The Study also provides us with a body of quantitative and qualitative data which serves as a foundation for our national advocacy and lobbying endeavours, while offering pharmaceutical companies the data they need to make targeted progress on treatments. And, ultimately, the findings of this study will inform our search for cures.

This is just the starting point; we will continue to involve the EB community in the next phases to ensure that we get services right for people with EB today and that we increase support and funding to enact change for people with EB tomorrow.

Carly Fields – Vice Chair of the DEBRA Board and mum to Naomi who has EB Simplex.

The EB Insights study is about getting our services right for people with EB today and understanding the most important issues to lobby politicians for support and funding for EB to change tomorrow. 

Insights from the study will help determine the campaigns we run, the research we fund and, most importantly, in determining what we do and how we do it.

There were three parts to our EB insights study:

1. An online survey for everyone affected by EB, their friends, family, and carers, over the age of 16.
2. 60-minute interviews with people around the country affected by different types of EB.
3. Interviews and surveys involving healthcare professionals working with people affected by EB.

The 2023 EB Patient Insight Study was commissioned and conducted on the behalf of DEBRA UK by Synergy Healthcare Research. The study was co-funded by Amryt Pharma and Krystal Biotech, neither company had any influence over the content. The copyright of this report is owned by DEBRA UK. To request permission to use any of the data from this report, please email [email protected]. Thank you.