I. Department of Internal Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; European Reference Network on Hepatological Diseases (ERN RARE-LIVER); Digital Health Center, Hasso Plattner Institute, Potsdam, Germany.
I. Department of Internal Medicine, University Medical Center Hamburg-Eppendorf, Hamburg, Germany; European Reference Network on Hepatological Diseases (ERN RARE-LIVER).
Clin Res Hepatol Gastroenterol. 2021 Nov;45(6):101760. doi: 10.1016/j.clinre.2021.101760. Epub 2021 Jul 27.
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.
This study aimed to investigate how an app for rare liver diseases would be accepted, and to find out which features are considered useful.
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.
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).
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.
为了改善对罕见肝脏疾病的研究，需要更多的患者数据。移动健康应用程序可以实现详尽的数据收集。因此，欧洲肝脏疾病参考网络（ERN RARE-LIVER）打算为患有罕见肝脏疾病的患者开发一款与患者注册中心通信的应用程序，但对于患者和他们的医疗保健提供者认为哪些功能有用，人们知之甚少。
本研究旨在调查一种用于罕见肝脏疾病的应用程序将如何被接受，并找出哪些功能被认为是有用的。
在一家学术性的三级护理门诊服务机构，对患有罕见肝脏疾病的成年患者进行了一项匿名调查。此外，还邀请了 ERN 自身免疫性肝炎工作组的医学专家参加在线调查。
共分析了 100 名自身免疫性（n=90）或其他罕见（n=10）肝脏疾病患者和 32 名专家的回复。患者确信会使用特定于疾病的应用程序（80%），并期望对他们的健康有益（78%），但年轻患者和老年患者的反应有显著差异（93%对 62%，p<0.001；88%对 64%，p<0.01）。将患者和专家的反馈进行比较，患者更频繁地期望简化医疗途径（例如，89%对 59%（p<0.001）希望访问自己的病历），而医疗保健提供者主要看到的好处是提高依从性和治疗效果（例如，93%对 31%（p<0.001）和 70%对 21%（p<0.001）分别期望应用程序减少服药错误并提高生活质量）。
我们的结果强调了对特定于疾病的应用程序的强烈需求，但也需要让患者和医疗保健提供者参与到此类应用程序的开发中，以实现长期使用，从而改善患者护理和研究。本研究的结果将极大地帮助实施第一个与 ERN 患者注册中心通信的跨国应用程序。
