Pedersen Susanne S, Schmidt Thomas, Skovbakke Søren Jensen, Wiil Uffe Kock, Egstrup Kenneth, Smolderen Kim G, Spertus John A
Department of Psychology, University of Southern Denmark, Odense, Denmark.
Department of Cardiology, Odense University Hospital, Odense, Denmark.
JMIR Res Protoc. 2017 May 23;6(5):e96. doi: 10.2196/resprot.7110.
Heart failure (HF) is a progressive, debilitating, and complex disease, and due to an increasing incidence and prevalence, it represents a global health and economic problem. Hence, there is an urgent need to evaluate alternative care modalities to current practice to safeguard a high level of care for this growing population.
Our goal was to examine the feasibility of engaging patients to use patient-centered and personalized tools coupled with a Web-based, shared care and interactive platform in order to empower and enable them to live a better life with their disease.
We used a mixed methods, single-center, pre-post design. Patients with HF and reduced left ventricular ejection fraction (n=26) were recruited from the outpatient HF clinic at Odense University Hospital (Svendborg Hospital), Denmark, between October 2015 and March 2016. Patients were asked to monitor their health status via the platform using the standardized, disease-specific measure, the Kansas City Cardiomyopathy Questionnaire (KCCQ), and to register their weight. A subset of patients and nursing staff were interviewed after 3-month follow-up about their experiences with the platform.
Overall, patients experienced improvement in patient-reported health status but deterioration in self-care behavior between baseline and 3-month follow-up. The mean score reflecting patient expectations toward use prior to start of the study was lower (16 [SD 5]) than their actual experiences with use of the platform (21 [SD 5]) after 3-month follow-up. Of all patients, 19 completed both a baseline and follow-up KCCQ. A total of 9 experienced deterioration in their health status (range from 3-34 points), while 10 experienced an improvement (range from 1-23 points). The qualitative data indicated that the majority of patients found the registration and monitoring on the platform useful. Both nursing staff and patients indicated that such monitoring could be a useful tool to engage and empower patients, in particular when patients are just diagnosed with HF.
The use of patient tracking and monitoring of health status in HF using a standardized and validated measure seems feasible and may lead to insights that will help educate, empower, and engage patients more in their own disease management, although it is not suitable for all patients. Nursing staff found the patient-centered tool beneficial as a communication tool with patients but were more reticent with respect to using it as a replacement for the personal contact in the outpatient clinic.
心力衰竭（HF）是一种进行性、使人衰弱且复杂的疾病，由于其发病率和患病率不断上升，它已成为一个全球性的健康和经济问题。因此，迫切需要评估替代当前治疗方法的护理模式，以确保为这一不断增长的人群提供高水平的护理。
我们的目标是检验让患者使用以患者为中心的个性化工具以及基于网络的共享护理和互动平台的可行性，以便增强他们的能力，使其能够更好地应对疾病。
我们采用了混合方法、单中心、前后对照设计。2015年10月至2016年3月期间，从丹麦欧登塞大学医院（斯文堡医院）门诊心力衰竭诊所招募了左心室射血分数降低的心力衰竭患者（n = 26）。要求患者通过该平台使用标准化的、针对特定疾病的测量工具堪萨斯城心肌病问卷（KCCQ）来监测自己的健康状况，并记录体重。在3个月的随访后，对一部分患者和护理人员就他们使用该平台的体验进行了访谈。
总体而言，患者报告的健康状况在基线和3个月随访之间有所改善，但自我护理行为有所恶化。反映患者在研究开始前对使用该平台期望的平均得分（16 [标准差5]）低于3个月随访后他们使用该平台的实际体验得分（21 [标准差5]）。所有患者中，19人完成了基线和随访的KCCQ。共有9人健康状况恶化（3 - 34分），而10人有所改善（1 - 23分）。定性数据表明，大多数患者认为在平台上进行注册和监测很有用。护理人员和患者均表示，这种监测可能是吸引患者并增强其能力的有用工具，尤其是在患者刚被诊断为心力衰竭时。
使用标准化和经过验证的测量工具对心力衰竭患者进行健康状况跟踪和监测似乎是可行的，并且可能会带来有助于教育、增强患者能力并使其更多地参与自身疾病管理的见解，尽管它并不适用于所有患者。护理人员发现以患者为中心的工具作为与患者沟通的工具很有用，但对于将其用作门诊个人接触的替代方式则更为谨慎。
