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

TY - JOUR

T1 - Mobile app requirements for patients with rare liver diseases: A single center survey for the ERN RARE-LIVER‬‬‬

AU - Rüther, Darius F

AU - Sebode, Marcial

AU - Lohse, Ansgar W

AU - Wernicke, Sarah

AU - Böttinger, Erwin

AU - Casar, Christian

AU - Braun, Felix

AU - Schramm, Christoph

N1 - Copyright © 2021 Elsevier Masson SAS. All rights reserved.

PY - 2021/11

Y1 - 2021/11

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 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.

AB - 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.

U2 - 10.1016/j.clinre.2021.101760

DO - 10.1016/j.clinre.2021.101760

M3 - SCORING: Journal article

C2 - 34325014

VL - 45

JO - CLIN RES HEPATOL GAS

JF - CLIN RES HEPATOL GAS

SN - 2210-7401

IS - 6

M1 - 101760

ER -