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Epidermolysis bullosa: Patient relevant outcomes and helpful factors for the quality of life

Completed
Project lead DDr. Gudrun Salamon
Organisation Sigmund Freud University, Vienna
Project budget EUR 130,000,00
Start date / Duration 01. Jul 2019 / 19 months
Funder(s) / Co-Funder(s) DEBRA Austria
Research area Psychology

Project details

Short lay summary

EB has an enormous impact on all aspects of psychosocial life. In EB, stress is caused by chronic pain, the need of intensive wound management and restrictions in everyday life. Additionally, these restrictions lead to social and emotional challenges. In this project, we focus on patient relevant outcomes of long-term medical and sociopsychological treatment for patients with EB with a special emphasis on what matters most for increasing their quality of life. To do so, we conduct an extensive literature review as well as interviews with EB patients, families and professionals.

Scientific summary

In addition to the rather medical point of view of treatment success, our study focuses on “patient relevant outcome“ and takes the individual concepts of and experiences with quality of life as well as the definition of and the coping strategies with success and failure of treatment and the course of disease. As indicated in previous research, EB has an enormous impact on all aspects of psychosocial life. Hence, quality of life is an important measure in psychological as well as in clinical research. However, quality of life is highly influenced by individual perception. The same applies to the concept of wellbeing, which describes the individual balance between personal resources and challenges faced. Coping strategies are an individual’s mental or behavioural response options to stress and to challenging situations. In EB, stress is caused by chronic pain, the need of intensive wound management and restrictions in everyday life. Additionally, these restrictions lead to social and emotional challenges.  

Goals of the project:

  • Systematic review of the literature on quality of life with EB
  • Conduction and analysis of interviews with EB patients, families and professionals
  • Better understanding of what is considered as helpful by EB patients

Strategic relevance

A better understanding of what is considered as helpful by EB patients can be used for adapting or expanding the support offers by DEBRA, especially for

  • specific support of EB patients and their families with achieving and maintaining quality of life
  • well-directed information and preparation of EB patients and their families in regard to the expected course of disease
  • knowledge of a set of coping strategies with success and failure of treatment and the course of disease

What did this project achieve?

For a thorough understanding of psychosocial aspects of EB, Gudrun Salamon and her team first conducted a systematic review of the scientific literature on this topic. They looked through 1113 papers and finally selected 38 to be analysed in detail.

For gaining more insights on burdens and helpful aspects of a life with EB, they led 42 interviews. They interviewed EB patients, their relatives, and EB professionals, from Austria, Germany, and Italy, and identified important helpful factors in dealing with EB. They found that, e.g., EB relatives mentioned more than two times more aspects where they wish to have more support than EB patients.

The research project has been awarded with the "Best clinical poster award: Special Recognition" at the  EB 2020 (Epidermolysis bullosa World Congress 2020). Several publications have been handed in and will be published within the next months.

Next steps: The next step is a survey on burdens and helpful aspects with EB. This will allow to better understand the different needs within the EB community. In the future, these results can be used as a basis for the design of support and interventions tailored to the needs of EB patients and their relatives.


Keywords

Epidermolysis bullosa
EB
quality of life
coping strategies
helpful factors
psychology
Salamon
Sigmund Freud University
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