A multicenter study on quality of life of the "greater patient" in congenital ichthyoses.

Damiano AbeniRoberta RotunnoAndrea DiociaiutiSimona GiancristoforoDomenico BonamonteCarmelo SchepisIria NeriDaniele CastigliaGiovanna ZambrunoMay El Hachem

Published in: Orphanet journal of rare diseases (2021)

Our findings highlight the major socio-economic and psychological burden imposed by ARCI on the QoL of family caregivers. In addition, they show that global evaluation of disease impact also on family members is an essential part of patient-reported outcomes. Finally, our data underline the need to develop specific measures for family support.

Keyphrases

patient reported outcomes
case report
electronic health record
big data
risk factors
sleep quality
depressive symptoms
deep learning