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Mobile app requirements for patients with rare liver diseases
- 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 aBackground: 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).…
Author details: | Ferenc Darius RütherORCiDGND, Marcial SebodeORCiDGND, Ansgar W. LohseORCiDGND, Sarah WernickeORCiD, Erwin BöttingerORCiDGND, Christian Casar, Felix Braun, Christoph SchrammORCiDGND |
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DOI: | https://doi.org/10.1016/j.clinre.2021.101760 |
ISSN: | 2210-7401 |
ISSN: | 2210-741X |
Pubmed ID: | https://pubmed.ncbi.nlm.nih.gov/34325014 |
Title of parent work (English): | Clinics and research in hepatology and gastroenterology |
Subtitle (English): | a single center survey for the ERN RARE-LIVER |
Publisher: | Elsevier Masson |
Place of publishing: | Amsterdam |
Publication type: | Article |
Language: | English |
Date of first publication: | 2021/07/27 |
Publication year: | 2021 |
Release date: | 2024/02/29 |
Tag: | Autoimmune; European reference networks; Mobile applications; Patient; Primary biliary cholangitis; Primary sclerosing cholangitis; hepatitis; reported out-come measures |
Volume: | 45 |
Issue: | 6 |
Article number: | 101760 |
Number of pages: | 10 |
Organizational units: | Digital Engineering Fakultät / Hasso-Plattner-Institut für Digital Engineering GmbH |
DDC classification: | 6 Technik, Medizin, angewandte Wissenschaften / 61 Medizin und Gesundheit / 610 Medizin und Gesundheit |
Peer review: | Referiert |