Change in the socio-economic burden of Epidermolysis Bullosa in Europe (BUR-EB Austria)

Short lay summary

Epidermolysis bullosa (EB) is an enormous burden not only for patients but also for carers. Studies on the socio-economic impact of EB are still rare, particularly in the German-speaking context.

BUR-EB stands for "Burden of the Disease".  As part of an international European Joint Programme for Rare Diseases (EJP RD) project (BUR-EB), this new survey aims to assess the socio-economic burden of EB in seven EU countries (Spain, France, Germany, Italy, Hungary, Bulgaria and Austria) and compare it with data collected ten years ago in the BURQOL-RD project also funded by the EJP RD).

In collaboration with clinicians and the local patient organisation DEBRA, an anonymous survey is being used to collect data on the impact of EB on the daily lives of affected people and their family carers.

The study includes recording and analysing the following aspects:

• economic burden (costs for healthcare and informal care, financial burden on families and loss of productivity) 
• burden on families and loss of productivity of all affected persons) as well as
• quality of life, family burden and subjective well-being.

In addition, in collaboration with those affected and their relatives, their life paths and coping strategies are analysed (patient's journey maps). This qualitative part of the study is not coducted in Austria but in all other participating countries.

The first studies on the topics of burdens, helpfulness and quality of life in Austria have already been carried out as part of the surveys by DDr Gudrun Salamon. Find out more under Salamon 1 + Salamon 2.

Scientific summary

The main aim of this study is to collect data on the impact of EB on the daily lives of affected individuals and their carers via an anonymous survey in collaboration with clinicians and patient organisations (DEBRAs). The economic burden takes into account healthcare and informal care costs, financial burden on families and loss of productivity of all affected individuals. Quality of life and family burden are also measured.

The Austrian survey consists of two steps: 
1. online registration (approx. 5 minutes): https://onlinebefragungen.sfu.ac.at/bur-eb
(in between: preparation of the necessary documents)
2. completion of the family questionnaire (approx. 30-40 minutes)

Find out more on the BUR-EB website and all links for participating countries: BUR-EB

Newsarticle about the launch of the survey (all countries)

Strategic relevance

BUR-EB offers the opportunity to observe how the social and economic impact of AE has changed over the last ten years and how these changes could be linked to the health and social policies implemented during this period. 
The project will provide tools that could be used in clinical trials of new therapeutic options. The working group at the Siegmund Freud University (SFU) in Vienna is involved in the development of the questionnaire, the quantitative survey of Austrian patients and the analysis of the study.

- There is currently no data available on EB-specific indirect or direct costs in Austria. This data is urgently needed, especially to speed up future authorisation procedures and cost reimbursements for new EB therapies. 
- Comparison with other European countries.