Valkonen Paula, Hölsä Sini, Viitanen Johanna, Leinonen Sini, Karisalmi Nina, Rauta Virpi
Department of Computer Science, Aalto University, Espoo, Finland.
Department of Nephrology, University of Helsinki, Helsinki University Central Hospital, Helsinki, Finland.
JMIR Hum Factors. 2025 Mar 18;12:e48221. doi: 10.2196/48221.
Chronic kidney disease (CKD) is a common condition worldwide and home dialysis (HD) provides economic, quality of life, and clinical advantages compared to other dialysis modalities. Human-centered design aims to support the development of eHealth solutions with high usability and user experience. However, research on the eHealth needs of patients using HD is scarce.
This study aimed to support the design of eHealth for patients with CKD, particularly for patients using HD, by developing a kidney disease experience map that illustrates user needs, concerns, and barriers. The research questions were (1) what experiences do patients, particularly older adults, have in their everyday lives with CKD? (2) what user needs do patients with CKD have for HD eHealth? (3) how can these needs be illustrated using the experience map technique? The study focused on patients aged >60 years, as they are at a higher risk of chronic conditions. The study was conducted as part of the eHealth in HD project, coordinated by Hospital District of Helsinki and Uusimaa, Finland.
In total, 18 patients in different care modalities participated in retrospective interviews conducted between October 2020 and April 2021. The interviews included a preliminary task with patient journey illustrations and questions about their experiences and everyday lives with CKD. The data analysis was conducted using a thematic analysis approach and the process included several phases.
On the basis of the thematic analysis, 5 categories were identified: healthy habits, concerns about and barriers to eHealth use, digital communication, patients' emotions, and everyday life with CKD. These were illustrated in the first version of the kidney disease experience map. The patients had different healthy habits regarding social life, sports, and other activities. They had challenges with poorly functioning eHealth software and experienced other factors, such as a lack of interest and lack of skills for eHealth use. Technical devices do not always meet the emotional or physical needs of their users. This caused feelings of frustration, worry, and fear in patients, yet also fostered situational awareness and hope.
The experience map is a promising method for illustrating user needs and communicating the patient's voice for eHealth development. eHealth offers possibilities to support patient's everyday life with chronic disease. The patient's situation and capacity to use eHealth solutions vary with their everyday challenges, opportunities, and their current stage of treatment. The kidney disease experience map will be used and further developed in the ongoing research project "Better Health at Home-Optimized Human-Centered Care of Predialysis and Home Dialysis Patients" (2022 to 2026).
慢性肾脏病（CKD）在全球范围内是一种常见病症，与其他透析方式相比，家庭透析（HD）具有经济、生活质量和临床方面的优势。以用户为中心的设计旨在支持开发具有高可用性和良好用户体验的电子健康解决方案。然而，关于接受家庭透析的患者的电子健康需求的研究却很匮乏。
本研究旨在通过绘制一张说明用户需求、关注点和障碍的肾脏病体验地图，来支持为CKD患者，特别是接受家庭透析的患者设计电子健康解决方案。研究问题包括：（1）患者，尤其是老年人，在日常生活中患有CKD的经历是怎样的？（2）CKD患者对家庭透析电子健康有哪些用户需求？（3）如何使用体验地图技术来说明这些需求？该研究聚焦于60岁以上的患者，因为他们患慢性病的风险更高。该研究是由芬兰赫尔辛基和乌西马医院区协调的家庭透析电子健康项目的一部分。
共有18名处于不同护理模式的患者参与了2020年10月至2021年4月期间进行的回顾性访谈。访谈包括一项带有患者就医流程插图的初步任务，以及关于他们患有CKD的经历和日常生活的问题。数据分析采用主题分析方法，过程包括几个阶段。
基于主题分析，确定了5个类别：健康习惯、电子健康使用的关注点和障碍、数字通信、患者情绪以及患有CKD的日常生活。这些在肾脏病体验地图的第一版中得到了体现。患者在社交生活、运动和其他活动方面有不同的健康习惯。他们在功能不佳的电子健康软件方面面临挑战，并经历了其他因素，如对电子健康使用缺乏兴趣和技能。技术设备并不总是能满足用户的情感或身体需求。这在患者中引发了沮丧、担忧和恐惧的情绪，但也培养了情境意识和希望。
体验地图是一种很有前景的方法，可用于说明用户需求并在电子健康发展中传达患者的声音。电子健康为支持慢性病患者的日常生活提供了可能性。患者使用电子健康解决方案的情况和能力因其日常挑战、机遇以及当前治疗阶段而有所不同。肾脏病体验地图将在正在进行的研究项目“家中更健康——优化以用户为中心的透析前和家庭透析患者护理”（2022年至2026年）中得到应用和进一步开发。
