Mobile app requirements for patients with rare liver diseases: A single center survey for the ERN RARE-LIVER‬‬‬

Darius F. Rüther, Marcial Sebode, Ansgar W. Lohse, Sarah Wernicke, Erwin Böttinger, Christian Casar, Felix Braun, Christoph Schramm

Research output: Contribution to journalArticlepeer-review

1 Scopus citations


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 significantly 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). Conclusion: Our results underline the great desire for disease-specific apps but also the need to involve patients and healthcare providers in the development of such apps in order to achieve long-term use and, thereby, improvements of patient care and research. The results of this study will help tremendously to implement the first cross-country app that communicates with an ERN patient registry.

Original languageEnglish
Article number101760
JournalClinics and Research in Hepatology and Gastroenterology
Issue number6
StatePublished - Nov 2021
Externally publishedYes


  • Autoimmune hepatitis
  • European reference networks
  • Mobile applications
  • Patient reported outcome measures
  • Primary biliary cholangitis
  • Primary sclerosing cholangitis


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