Burdens and helpful aspects for achieving and maintaining quality of life with epidermolysis bullosa (Salamon 2)
Completed| Project lead | DDr Gudrun Salamon |
| Organisation | Sigmund Freud University, Vienna, AUSTRIA |
| Project budget | EUR 201,990.00 |
| Start date / Duration | 01. Mar 2021 / 24 months |
| Funder(s) / Co-Funder(s) | DEBRA Austria |
| Research area | Psychology |
Publications related to the projects
Translation, cultural adaptation and validation of the German Quality of Life in Epidermolysis Bullosa (QOLEB) questionnaire iscorEB-p: A patient-reported outcome measure for Epidermolysis bullosa. Psychometric properties of the Patient Score from the Instrument for Scoring Clinical Outcome of Research for EB Facing the complex challenges of people with epidermolysis bullosa in Austria: a mixed methods study on burdens and helpful practicesProject details
Short lay summary
Epidermolysis bullosa (EB) heavily influences the quality of life. With this study, we want to identify the needs of people living with EB and their relatives. Not all people are the same: Different needs might be related to factors influencing the quality of life, such as the EB form and the degree of severity, the role of the person towards the EB patient, personal resources, and other social factors such as age, gender, educational and financial background, place of residence (town vs. countryside), or the amount of social support.
This is important because:
- the needs of relatives have not been investigated from this point of view
- our results can be used as a basis for the design of support and interventions tailored to the needs of EB patients and their relatives
- high participant numbers are important because many organizations need facts and figures, not just recommendations, to make their decisions about financial support for people with EB
Scientific summary
Epidermolysis bullosa (EB) heavily influences the quality of life of people living with EB and of their relatives. Several research projects have described the problems and burdens of a life with EB. However, few has been published on helpful aspects. Within our project, we want to focus on the following question: When dealing with EB, what is considered as helpful by whom? Differences might be related to factors influencing the quality of life, which have been identified as related to the EB form and the degree of severity, the role of the person interviewed, and other social factors such as age, gender, educational and financial background, place of residence (town vs. countryside), or the amount of social support. All these possible factors need to be brought in relation to what is considered as helpful when dealing with EB in order to be able to identify subpopulations with different needs.
To this end, we design an online survey that takes several aspects of quality of life into consideration: current medical state, quality of life, personal and social resources and what is considered as helpful. For being able to compare the situation of EB patients and their relatives living in Austria with others around the world, the survey is circulated in several German and English speaking countries.
Strategic relevance
In short, the aims of this project are
- to deepen our understanding to what is helpful for EB patients
- to gain insights in psychosocial effects of EB on parents, partners, and siblings of EB patients
- to achieve a solid data basis for information on burdens and helpful factors when dealing with EB
- to build up knowledge about the situation of EB relatives and their families in different countries
This research shall build a basis for
- support of EB patients and their relatives in a more differentiated way
- targeted strategies for support and promotion
See initial project lead by DDr. Salamon: Epidermolysis bullosa: Patient relevant outcomes and helpful factors for the quality of life.
What did this project achieve?
The following points were realised in the research project:
- Differentiation of psychosocial burdens and resources: Are the identified burdens and resources relevant for the majority of those affected and their relatives?
- Data collection with 225 participants from 27 countries (56 of them from Austria)
- Test development, translation and validation: To enable more precise and targeted research in German-speaking countries, we have translated and validated the Quality of Life in Epidermolysis Bullosa Questionnaire (QOLEB), the Family Burden Questionnaire (EB-BoD) and the Health Status Survey (iscorEB-p) for German. For better comparability with other countries, we have also validated the latter two questionnaires for English. We are currently working on the development of our own questionnaire on resources for dealing with EB, which is designed to provide people with EB and their families with a tool to identify existing and potential future resources.
Next steps: The next step should be a targeted application based on the knowledge gained. The aim is to actively strengthen the resources and existing helpful practices of those affected and their relatives.