Heilbronn University of Applied Sciences.
MOLIT Institute gGmbH.
Stud Health Technol Inform. 2021 May 24;278:110-117. doi: 10.3233/SHTI210058.
Health-related quality of life (HR-QoL) as a parameter for patient well-being is becoming increasingly important.[1] Nevertheless, it is mainly used as an endpoint in studies rather than as an indicator for adjustments in therapy. In this paper we will present an approach to gradually integrate quality of life (QoL) as a control element into the care delivery of oncology.
Acceptance, usability, interoperability and data protection were identified and integrated as key indicators for the development. As an initial approach, a questionnaire tool was developed to provide patients a simplified answering of questionnaires and physicians a clearer presentation of the results.
As communication standard HL7 FHIR was used and known security concepts like OpenID Concept were integrated. In a usability study, first results were achieved by asking patients in the waiting room to answer a questionnaire, which will be discussed with the physician in the appointment. This study was conducted in 2019 at theSLK Clinics Heilbronn and achieved 86% participation of all respondents with an average age of 67 years.
Although the evaluation study could prove positive results in usability and acceptance, it is necessary to aim for longitudinal surveys in order to include QoL as a control element in the therapy. However, a longitudinal survey through questionnaires leads to decreasing compliance and increasing response bias. [2] For this reason, the concept needs to be expanded. With sensors a continuous monitoring can be carried out and the data can be mapped to the individual, interpreted by machine learning.
Questionnaires are a concept that has been successfully applied in studies for years. However, since care delivery poses different challenges, the integration of new concepts is inevitable. The authors are currently working on an extension of the use of questionnaires with patient generated data through sensors.
健康相关生活质量（HR-QoL）作为患者福祉的参数变得越来越重要。[1] 然而，它主要用作研究中的终点，而不是治疗调整的指标。在本文中，我们将介绍一种方法，逐步将生活质量（QoL）作为控制要素纳入肿瘤学的护理提供中。
接受度、可用性、互操作性和数据保护被确定并整合为开发的关键指标。作为初始方法，开发了一个问卷工具，为患者提供简化的问卷回答，为医生提供更清晰的结果呈现。
使用了 HL7 FHIR 作为通信标准，并整合了已知的安全概念，如 OpenID 概念。在一项可用性研究中，首先让候诊室的患者回答问卷，然后在预约时与医生讨论。这项研究于 2019 年在 SLK 诊所 Heilbronn 进行，所有受访者的参与率达到 86%，平均年龄为 67 岁。
尽管评估研究在可用性和接受度方面可以证明积极的结果，但有必要进行纵向调查，以便将生活质量作为治疗的控制要素纳入。然而，通过问卷进行纵向调查会导致依从性降低和响应偏差增加。[2] 出于这个原因，这个概念需要扩展。通过传感器可以进行连续监测，并可以将数据映射到个体，由机器学习进行解释。
问卷是一种多年来在研究中成功应用的概念。然而，由于护理提供带来了不同的挑战，因此必须整合新的概念。作者目前正在研究通过传感器扩展使用患者生成数据的问卷的用途。
