Chronic kidney disease (CKD) is a common condition worldwide. It has been estimated that 11% to 13% of the population in high-income countries have CKD. The number of patients with advanced kidney disease is growing 5% to 7% per year [1,2]. The prevalence of CKD is highest among older adults, ranging from 38% to 44% in patients aged >65 years [3,4]. In total 2.05 million people were treated with dialysis worldwide in 2010 [2]. In 2017, 1.2 million people died globally because of CKD [5].

Patients with end-stage CKD need kidney transplants or dialysis to survive. Dialysis can be performed in a dialysis unit in a hospital (ie, in-center dialysis), in a satellite dialysis unit, or at home using peritoneal dialysis or hemodialysis. The dialysis modality may vary depending on the patient’s current health and life situation. Both in-center and satellite dialysis can be laborious for patients [6] and impose a heavy financial burden on medical care [7]. Therefore, home dialysis (HD) provides better quality of life and clinical advantages and empowers patients by providing them with more flexibility in their everyday lives [6,8].

Even though bringing dialysis treatment to a patient’s home might be burdensome and complicated for both the patient and the health care unit [8,9], there is a common understanding that HD prevalence needs to increase [1]. HD creates opportunities to improve the patient’s safety and quality of life, as well as to support self-management of health [6,10]. HD has also proven to be feasible for older adults, even though challenges such as fear of needles or doubts about handling them, or other physical limitations have been recognized [8,11,12].

Research advises a holistic eHealth design that integrates technologies, end users, and use contexts [13-15]. Using human-centered design (HCD) approach [16], our study aimed to support the design of eHealth for patients with CKD, especially those on HD care, by investigating user needs, concerns, and digital service barriers, and illustrating those in the format of a kidney disease experience map. Due to the high prevalence of CKD among older adults [8], both in Finland and worldwide [17], the focus of the study was set on the perspective of older adults. The research questions were as follows:

The study was part of the eHealth in HD project (“device research”) [18] coordinated by the Hospital District of Helsinki and Uusimaa in Finland from 2020 to 2022. The project aimed to create a novel eHealth solution for patients with CKD undergoing HD (named “Home dialysis eHealth solution”) and research devices that support patients both before and throughout dialysis therapy by gathering monitoring data, managing HD supply orders, and facilitating communication between the patient and the health care team (Figure 1).

HCD is an approach to interactive system development that aims to develop solutions with high usability and user experience [16]. The principles of HCD highlight the importance of involving end users in an iterative design process [16,19] and understanding their needs at the beginning of the development process [16,19].

When exploring user needs, researchers collect information, for example, about what features digital services should contain and how they should function from the perspectives of end users. The user needs exploration is important as it helps service designers to understand the role and meaning of the solutions for end users, in our case, patients using HD. eHealth is used to refer to digital health services, and health information offered through the internet or other technology solutions improving health care [20,21]. By designing in a human-centric way and involving end users in the development, eHealth can offer more value and new ways to provide health care and well-being services for patients and all citizens [13,21]. For patients with chronic illnesses, eHealth solutions can offer new communication possibilities between the patient and the health care team, as well as support empowerment and improve quality of life [21,22].

A patient journey map and an experience map are tools for 2 different purposes. In this study, patient journey maps were used as a part of patient interviews [23], and an experience map was used to communicate the results of the study holistically.

Patient journey maps as tools for visualizing patient journeys can be used to support the design of eHealth in several ways. The maps can help researchers and designers to identify how health care processes can be improved, for example, identify gaps and improve the processes by integrating eHealth solutions as part of those processes [24]. The patient journey maps sum up patients’ experiences and care activities in a single, chronological, timeline-type visualization [24]. As the maps can help to explain what patients go through with their disease [23,24], they can help designers promote empathy, which is important in HCD [25-27]. Furthermore, they can help the sharing of knowledge between stakeholders as well as activate creative thinking [28].

Patient journey maps can be applied in various specialties regardless of the medical condition. For example, patient journey maps have been used to illustrate home isolation experiences of people with mild COVID-19 [29], hypertensive disorders in pregnancy [30], cancer [24], cervical dystonia [31], and kidney diseases [32]. In literature, the focus of patient journey maps varies from communicating patients’ emotions and identifying process gaps to the importance of shared decision-making [33].

Experience maps are tools to combine situations, functions, emotions, and contacts in the same visualization [34]. Experience maps are valuable in the development of various eHealth, mobile health, and other apps, helping to communicate, for example, how cancer affects a patient’s life and capturing patients’ voices [35]. However, similar to patient journey maps, there is no standardized way to visualize and use them in an eHealth development context [33]. To our knowledge, no experience maps have been produced to represent the everyday life of patients with CKD using HD. Even though working with experience maps helps to identify users’ needs [34], based on our literature review, few patient journey maps or experience maps focus on illustrating and communicating the needs as a basis for eHealth design and requirements specification.

The European population is aging [36]. In Finland, >2 million citizens (ie, 36% of the population) are ≥55 years old [37]. Finnish older adults have good self-confidence in using digital services. In the 55 to 64 age group, >80% of Finns felt that their digital skills were at least on par with those of other Finns, and in the 65 to 74 age group, >60% of Finns felt the same [38]. At the same time, the number of patients in Finland who undergo dialysis, is expected to increase by >36% before 2040 [39]. Therefore, Finnish older adults seem to have both a need for and self-confidence in using CKD eHealth.

Older adults, due to an increase in diseases and complex health issues, could benefit substantially from eHealth [40]. Still, they experience several barriers to using eHealth, such as privacy concerns, lack of motivation to use digital solutions [41,42], and challenges to finding, accessing and understanding health-related information [40,43]. In addition, they have concerns about eHealth reducing the time with the physicians during appointments [42]. Although they can benefit from eHealth, they still face several challenges that could be solved with careful design.

The health situation also affects the use of the eHealth and user needs. Many eHealth tools are intended for the treatment of a specific disease. One or more chronic health conditions can lead to several regular self-management tasks [40], which can potentially affect a patient’s everyday life and the use context of eHealth. Therefore, eHealth should be adapted to each user’s special situation [44].

Combining different context-specific strategies is important when developing services in a complex environment, such as health care [15]. Our study on user needs of patients with CKD for eHealth used a qualitative research approach and semistructured interviews [23,45] as the primary method for data gathering. The interviews were supported with preliminary tasks, which included visualizing patient’s journey in the form of a timeline drawing [23]. The procedure of the study included several phases starting from the recruitment and ending with the creation of the kidney disease experience map illustration (Figure 2).

The empirical study was conducted as part of the eHealth in HD project, which received permission from the ethical committee of the Hospital District of Helsinki and Uusimaa (HUS/1649/2020, Jarkko Ihalainen). All participants gave their voluntary, informed, and written consent. The patients’ capabilities to participate in the study were ensured. While analyzing the data, the information of the patients participating in the study was pseudonymized and coded with the identification numbers. Only the researchers assigned to the study had access to the data. No compensation was paid to the participants for their participation.

In total, 18 patients aged ≥60 years participated in the study: 5 patients in predialysis phase, 4 patients in satellite dialysis, 5 patients in home peritoneal dialysis care, and 4 patients in home hemodialysis care (Table 1). Most of the participants were retired. The sample excluded in-center patients with dialysis, but included patients with dialysis in satellite units. The participants were recruited from the group of patients who were participating in the larger research project of HD eHealth solution development.

The health care team recruited the patients by distributing materials about the study and asking about their interest in participation. Participation was voluntary and they did not get any compensation. The study participants were already familiar with the novel HD eHealth solution under development and had tested the first version of the solution. The research nurse contacted the potential participants first and informed them about the study. If the participants wanted to participate in the study, they signed the consent form, and the research nurse provided their contact information to the researchers. Then, the research material package, prepared by the researchers, consisting of a cover letter, a preliminary interview task, background information forms, and the responsible researcher’s contact details were sent to the participants. After sending the package to the participants, the researcher called them to provide more detailed instructions, answer any questions, and schedule a time for the remote interview.

Interviews are useful in the phases of any development process related to eHealth [15]. In our study, retrospective interviews included questions about the patient’s journey, treatments experiences, cooperation with the health care team, technology experiences, and visions for the future. The themes broadly covered patients’ everyday experiences with the illness, practical questions, and the comprehensive timeline with CKD.

The idea of the visual timeline drawing as the preliminary task for the interview was to (1) help the interviewee to process and structure their multistage patient path even before the interview, and (2) help with communication between the interviewee and researcher during the remote interview [23]. The preliminary task was sent to the interviewees 2 weeks before each interview. In this task, patients were asked to identify and illustrate significant milestones, events, and experiences with their illness to a timeline. The patients returned the task to the researchers before the remote interview.

The interviews were conducted between October 2020 and April 2021 when the second wave of COVID-19 was underway in Finland. For safety reasons, the interviews were arranged remotely via Microsoft Teams. Two researchers were present in the interview session with the participating patient: one researcher being the interviewer and the other note-taker. Interviews were audio-recorded using recording functionality of Microsoft Teams. Data gathering was conducted in collaboration with 5 researchers (SL, NK, JV, SH, and PV): 2 doctoral researchers, 2 students, and a professor from the human-computer interaction field.

An experience map is a tool that strings the perspectives of the context of use, people, and technology, together in a holistic manner [13-15]. The maps can be used to support the communication between stakeholders and to capture a patient’s voice in eHealth design [35]. The first version of the kidney disease patient experience map (Figure 4) was made by combining remarks from existing example models particularly the cancer experience map [35]. In the first paper-based template of our map, the preliminary phases from the preliminary tasks (ie, patient journey maps) were illustrated: “before diagnosis,” “diagnosis and passive treatment,” “treatment method selection,” “beginning of treatment/training,” and “home dialysis.” Post-it notes from the comprehensive affinity diagram were added under those phases. The first draft of the patient experience map was created in collaboration with 3 researchers.

Next, the structure of the experience map was refined based on the number of post-it notes in each phase. The duplicate post-it notes were removed and the content of the map was reorganized (PV, SH, and JV). To validate the contents of the draft map further, 2 researchers (PV and SH) reexamined the post-it notes after which 4 other researchers (JV, NK, SL, and VR) gave feedback on the next version of the map. After all, in total of 6 researchers (PV, SH, JV, NK, SL, and VR) participated at least somehow in the experience map visualization process. The published version of the first version of the kidney disease experience map was finalized by PV. An overview of the multiphase analysis process which led to the creation of this first version of the kidney disease experience map is illustrated in Figure 4.

As the outcome of the study, the first version of the kidney disease experience map, which illustrates the user needs, concerns, and barriers of patients with CKD for eHealth, was created. This section explores the patients (ie, people), technology, and context of use perspectives [13-15]. First, patients’ healthy habits are investigated and their concerns and barriers to technology are addressed. Then, the technology is examined, concentrating on digital communication. Finally, the context of use from the perspective of patients’ everyday lives is explored. Due to sensitive personal issues, research results and citations are presented without identification information to ensure complete anonymity of the participants.

The patients had different needs for healthy habits regarding social life, sports, and other activities (Multimedia Appendix 3). Patients mentioned that social life and taking care of close relatives, such as grandchildren, were important to them. Incidental exercises, including gardening or shoveling snow, were popular. Being in nature, picking mushrooms or berries, fishing, and hiking, along with other everyday life activities, such as club and society activities or studying, brought well-being to the participants. Animals, for example, dogs, cats, and summer chickens, also supported the participants’ well-being. Handcrafting, art, and culture were also seen as important, but COVID-19 restricted those activities. The importance of many remote social contacts was mentioned in the data, and patients had to learn new eating habits, such as losing weight or cutting down on alcohol consumption.

Patients were challenged with poorly functioning available eHealth solutions and also experienced other negative factors, such as lack of interest or lack of skills (Multimedia Appendix 4). Technical devices did not always meet the emotional or physical needs of their users. This caused emotions like frustration, worry, and fear from patients. The patients’ responses covered their available eHealth solutions, not focusing especially on the HD eHealth solution.

The solution or software used by patients for their CKD care was found to function poorly in many ways. For example, the devices as a part of the HD eHealth solution did not work as expected, or they worked differently than they expected:

Alongside poorly functioning devices, in some cases, the HD eHealth app also did not work well. The software content (eg, one’s results or visualizations of one’s health situations) was challenging to understand or find. The HD eHealth app was challenging to use with small mobile phone screens and its user interface terminology caused problems for patients:

The participants doubted the functionality of the HD eHealth solution, both devices and the app. With the dialysis monitor, they were worried that something would go wrong:

The first version of the kidney disease experience map (Figure 5 [1-3,35]) was developed from the perspective of user needs of eHealth. It includes their needs for everyday life with CKD (ie, “Common needs”), needs relating to 4 phases of the journey of patients with CKD, and needs in all journey phases of patient with CKD from diagnosis to kidney transplant or death. The patient journey phases, which are inspired by the experience timeline of cancer experience map [35], are “Diagnosis and passive treatment,” “Predialysis,” “HD,” and “Preparing for kidney transplant or death.” In the top corner of our map kidney disease statistics and patients’ everyday life experiences with CKD are illustrated.

The first version of the kidney disease experience map (Figure 5) includes aspects from all three perspectives [13-15]:

On the basis of our study, eHealth as a part of the daily lives of the patients with CKD was perceived as being useful, but the patients also had challenges with devices and apps. Acknowledging that CKD is a long-lasting journey, it is essential to consider long-term user experiences. Finally, several user needs in different phases of the journey of patients with CKD were identified and illustrated with the first version of the kidney disease experience map.

In the study, the experience map describing the patient’s experience was formed based on the qualitative data from retrospective interviews and preliminary tasks. This first version of the kidney disease experience map can be used as a basis for other experience maps related to kidney diseases in the future. In addition, it can also bring perspective to the experience maps of other chronic diseases.

The presented results can be used to support the further development of HD eHealth. The results have already been used in HD eHealth solution development project in Finland (eg, to inform the redesign of the solution user interfaces).

Experience maps, such as the map created in the study, can help researchers, designers, and developers to empathize with the patients with chronic illnesses, and to understand their needs and use contexts for future eHealth innovations. We see our kidney disease experience map and other similar maps having the potential to help design the solutions from a more holistic perspective compared to currently prevailing practices [13,21], as well as to create a base for the new ecosystems and new ways to offer health care in the future [21]. We continue the work in the ongoing research project “Better Health at Home—Optimized Human-Centered Care of Predialysis and Home Dialysis Patients” (2022 to 2026).

Our study had some limitations. First, exploring the context of use was not allowed at patients’ homes due to COVID-19 restrictions. Therefore, we needed to collect data remotely. This was partly problematic because the patient’s home is the main context of using HD eHealth. In contrast, due to the patient journey preliminary task and participants’ open-minded attitude during the interviews, we were able to gather rich data about user needs and the context of eHealth use. In our study, the possible impact of the COVID-19 period was considered.

Our sample size is quite small, however, typical for a qualitative interview study. The representativeness of our sample can be questioned as it is divided from a larger patient group based on age and treatment methods. To find as comprehensive a sample as possible, while ensuring the safety of the participants with their ongoing treatment, the health care team helped researchers in recruiting participants for the research study.

Due to the personal nature of health information and privacy, we could not release the participants’ background information, such as specific ages or treatments in this paper. In addition, the indirect identifiers have been removed from the paper. The relative satisfaction of the patients in their lives despite CKD could have been influenced by various factors, besides the HD eHealth solution. First, the target group in this study included only active patients with relatively good physical conditions for research ethics reasons. Second, many of them were waiting for a kidney transplant, which brought them hope with the disease. Overall, there was a lot of variation in emotions, but deep gloom appeared in the data only rarely.

The first version of the kidney disease experience map was created based on a reasonable amount of qualitative data of the everyday lives on patients aged ≥60 years in Finland. Before participating in this study, the patients already knew that the study covered new eHealth solution testing. Therefore, perspectives from patients whose condition is very weak and those whose attitude is not open to new technology are missing in this study. In contrast, research shows that HD is optimal for those who live in areas with long distances to travel to an in-center dialysis unit [6,7]. In part, this can also be seen in the first version of the kidney disease experience map: the study did not include patient experiences during the kidney transplant phase—meaning that the user needs related to this essential phase of the patient journey are missing from our map. In future, the introduced version of the kidney disease experience map can be updated by including motivational issues for HD.

The study was conducted as an integrated part of the patient’s normal CKD treatment, so the research setup was organized in line with the patients’ typical daily conditions and treatments. The study included participants who started using the HD eHealth solution shortly before the interviews but also those who had already been using the solution for several months. Thus, the study covered both novice users and more experienced users. Patients’ reported technology skills varied from weak to good.

This study provided initial experiences of creating an experience map to illustrate patients’ needs for eHealth. In addition, the patients’ experiences from the HD eHealth solution development can offer important perspectives to other development projects regarding patients with CKD. Further research is needed to gather more experience about the applicability of the method. We aim to continue the research with patients with CKD and HD eHealth designs. We will use the illustrated first version of the kidney disease experience map and the listed user needs in further analysis, which will aim to describe design principles and guidelines for HCD of eHealth for patients using HD and other patients with chronic illnesses.

The outcome of the first version of the kidney disease experience map offers insights to the different phases of the patient journey for patients with kidney disease at the HD care. Due to the diverse experiences of patients in different phases of the care process, different types of kidney diseases could also be studied and visualized with experience maps. In addition, the next versions of the kidney disease experience maps could focus on specific days and months. The next versions of the kidney disease experience maps could also be created from the health care team’s perspective.

The content of the first version of the kidney disease experience map was collected with qualitative research methods, which made the consideration of the many different nuances possible. Due to the qualitative nature of the data collection for the first version of the kidney disease experience map, we did not prioritize the available content, for example, based on the amount of the post-it notes. However, without careful prioritization, there is always a risk that the map is too challenging to use as a part of the practical software development work. Therefore, we will involve the patients, as well as the health care team, designers, and software developers, in prioritizing the content of the map in the future.

The perspectives of patients using in-center dialysis are missing from that data, which was the base of the first version of the kidney disease experience map. However, we believe the creation of experience maps for the eHealth needs of patients using in-center dialysis is important for the future as the dialysis modalities might change depending on the patient’s health and life situation.

Our study pointed out the need for further research on the existentialism perspectives of the patients with chronic illnesses using eHealth. Deeper understanding is required on user needs and the role of eHealth as a part of patients’ everyday lives, even when life is nearing its end [50-52].

eHealth offers possibilities to support the key needs of patients with chronic diseases, such as CKD; however, digital services need to adapt to a wide variety of situations and user needs because kidney diseases are unique to each patient. Patient experiences vary both between and within the stages of treatment. In addition, the patient’s situation, needs, and capacity to use eHealth vary with everyday challenges and opportunities. Furthermore, with older adult patients, the problems that come with age increase the spectrum of barriers to use eHealth and associated challenges.

eHealth should enable proactive communication between the patient and the health care team. Furthermore, awareness of the status should be formed for both parties in real time, as much as possible. In this way, the patients feel safe, are more motivated in their treatment, and take responsibility for themselves.

The experience map is a promising method for illustrating user needs for eHealth, communicating a patient’s voice and describing the longitudinal patient journey to support eHealth development. Our first version of the kidney disease experience map combines people, context of use, and technology perspectives holistically and illustrates the eHealth needs of patients with CKD for the future.