Facing the complex challenges of people with epidermolysis bullosa in Austria: a mixed methods study on burdens and helpful practices.

Gudrun Salamon Ursula Field-Werners Sophie Strobl Vinzenz Hübl Anja Diem

Published in: Orphanet journal of rare diseases (2024)

The outcome is mapped to concrete implications regarding targeted support for EB patients and their relatives on an individual level and their needs in regard to the Austrian health care system.

Keyphrases

end stage renal disease
newly diagnosed
ejection fraction
chronic kidney disease
primary care
healthcare
peritoneal dialysis
prognostic factors
cancer therapy
drug delivery
patient reported outcomes