TY  - JOUR
A1  - Rüther, Ferenc Darius
A1  - Sebode, Marcial
A1  - Lohse, Ansgar W.
A1  - Wernicke, Sarah
A1  - Böttinger, Erwin
A1  - Casar, Christian
A1  - Braun, Felix
A1  - Schramm, Christoph
T1  - Mobile app requirements for patients with rare liver diseases
BT  - a single center survey for the ERN RARE-LIVER
JF  - Clinics and research in hepatology and gastroenterology
N2  - Background: 
More patient data are needed to improve research on rare liver diseases. Mobile health apps enable an exhaustive data collection. Therefore, the European Reference Network on Hepatological diseases (ERN RARE-LIVER) intends to implement an app for patients with rare liver diseases communicating with a patient registry, but little is known about which features patients and their healthcare providers regard as being useful. 

Aims: 
This study aimed to investigate how an app for rare liver diseases would be accepted, and to find out which features are considered useful. 

Methods: 
An anonymous survey was conducted on adult patients with rare liver diseases at a single academic, tertiary care outpatient-service. Additionally, medical experts of the ERN working group on autoimmune hepatitis were invited to participate in an online survey. 

Results: 
In total, the responses from 100 patients with autoimmune (n = 90) or other rare (n = 10) liver diseases and 32 experts were analyzed. Patients were convinced to use a disease specific app (80%) and expected some benefit to their health (78%) but responses differed signifi-cantly between younger and older patients (93% vs. 62%, p < 0.001; 88% vs. 64%, p < 0.01). Comparing patients' and experts' feedback, patients more often expected a simplified healthcare pathway (e.g. 89% vs. 59% (p < 0.001) wanted access to one's own medical records), while healthcare providers saw the benefit mainly in improving compliance and treatment outcome (e.g. 93% vs. 31% (p < 0.001) and 70% vs. 21% (p < 0.001) expected the app to reduce mistakes in taking medication and improve quality of life, respectively).
KW  - Primary sclerosing cholangitis
KW  - Primary biliary cholangitis
KW  - Autoimmune
KW  - hepatitis
KW  - European reference networks
KW  - Mobile applications
KW  - Patient
KW  - reported out-come measures
Y1  - 2021
U6  - https://doi.org/10.1016/j.clinre.2021.101760
SN  - 2210-7401
SN  - 2210-741X
VL  - 45
IS  - 6
PB  - Elsevier Masson
CY  - Amsterdam
ER  -