@article{RuetherSebodeLohseetal.2021,
  author    = {R{\"u}ther, Ferenc Darius and Sebode, Marcial and Lohse, Ansgar W. and Wernicke, Sarah and B{\"o}ttinger, Erwin and Casar, Christian and Braun, Felix and Schramm, Christoph},
  title     = {Mobile app requirements for patients with rare liver diseases},
  series = {Clinics and research in hepatology and gastroenterology},
  volume    = {45},
  journal   = {Clinics and research in hepatology and gastroenterology},
  number    = {6},
  publisher = {Elsevier Masson},
  address   = {Amsterdam},
  issn      = {2210-7401},
  doi       = {10.1016/j.clinre.2021.101760},
  pages     = {10},
  year      = {2021},
  abstract  = {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).},
  language  = {en}
}