This single-center study was situated in the University Medical Center Groningen (UMCG) in the Netherlands. The UMCG is a major academic hospital where all types of transplants are performed including kidney, liver, lung, heart, and stem cells. In the UMCG, a multidisciplinary kidney transplant team consisting of nephrologists, surgeons, specialized nursing professionals, and a variety of supporting staff members coordinates all kidney transplants. To date, the UMCG has performed over 5,000 kidney transplants and, over time, developed an active LKD program. As a result, more than 50% of the annual transplants involve living kidney donors. Using the EBCD approach, this study sought to identify areas for improvement in the care process of the LKD program.

The main characteristic of EBCD is that patients and professionals work together to improve a given care pathway. A detailed description of the EBCD approach can be found in the literature (25, 26). Using EBCD, areas of improvement can be found in the moments when professionals and living kidney donors interact. When such interactions have a high impact on the experience of donors they are also referred to as ‘moments of truth’. As far back as 1990, the importance of managing these moments of truth in service delivery was extensively described by Christian Grönroos (32).

The full cycle of the EBCD approach consists of six stages: (a) setting up the project, (b) data gathering from professionals, (c) data gathering from patients/donors, (d) discussing the results with participants and an initial co-design of an improved care pathway, (e) organizing teams for detailed co-design, and (f) a celebration event. Given the complexity of the approach and the significant burden on participants’ time, it is not uncommon to adjust the approach to achieve a better fit with a given context (31, 33–35). Consequently, we customized EBCD to the UMCG context and focused on the first four stages to answer our three research questions.

We started with the first stage, setting up the project, which included developing inclusion criteria for participants. The study was approved by the Medical Ethical committee (METc) of the UMCG (2022/173). All participants were given written information about the study prior to the interviews and signed an informed consent form.

In the second stage, data gathering from professionals, we interviewed nine members of the transplant team (including nephrologists, living kidney donation coordinators, nurse specialists, physician assistant, and social workers). We interviewed them face-to-face, five individually and four in pairs of two. The interviews were summarized by the interviewer and approved in writing by the interviewees. We used a discovery interview technique, aiming to produce a topic list to be used as an interview guide in the face-to-face interviews with the donors (20, 36). After we developed the topic list (Table 1) we started the third stage.

We consider the third stage of EBCD, gathering data on donors’ experiences, as the heart of the process because the ultimate goal of EBCD is to bring user experience to the care improvement process. Data can be gathered in different ways, for instance with surveys or by collecting patient narratives (37, 38). Supported by earlier studies, we chose to collect patient narratives as an appropriate way to collect in-depth and detailed insights into the donors’ experiences and to identify areas for potential improvement (21, 24, 30, 31). We selected nine donors who, following our inclusion criteria, had not had any severe medical issues following surgery. Except one participant who donated shortly after the interview due to circumstances. One donor declined to participate but eight were willing to share their personal donor journey with us. Six donors were female, two were men. The donors’ ages varied between 44 and 74 (mean 56 years) and the time elapsed of seven donors since donation varied between 3 weeks and 40 months (mean 17 months). The donors’ lived experiences were captured in personal stories and resulted in detailed insights into how they experienced the entire donation care pathway from intake and screening to inpatient care and aftercare. As researchers, we concluded that inviting additional donors would not produce significant additional information.

In the fourth stage, discussing results, we first analyzed the data from the interviews and focused on identifying areas for improvement. Two authors (MvL, WS) performed a thematic analysis (39, 40) using Atlas.ti (ATLAS.ti Scientific Software Development GmbH, Berlin, Germany) for initial coding and, after discussion, extracted 11 themes from the data as possible areas for improvement (41).

The next step in the fourth stage was to organize two separate sessions, for professionals and for donors, to discuss the results with both groups. All the participants received the analysis in advance and were asked to think about priorities in the themes for improvement. The first session with professionals was face-to-face, the second session with donors was a virtual meeting using Microsoft Teams (Microsoft Corporation, Albuquerque, New Mexico, United States). Notes were taken during both sessions. Three authors (MvL, WS, AV) were present during the session with professionals, two (MvL, WS) in the MS Teams meeting with donors. We concluded that the 11 themes were recognized by both groups. The group discussions also included an initial setting of priority themes that could be useful for organizing the fifth stage, co-designing improvements in the chosen areas.

The interviews revealed that, during the donation process, some moments are experienced as critical by the donors. Such moments include medical approval for donation, setting a date for surgery, and when the surgery is postponed at the last moment due to urgent events in the hospital. During these crucial moments, both donors and their families can be in a heightened mental state than normal. If communication at such moments is not carefully executed, this can cause feelings of frustration, disappointment, or anger. An example was donor B, who stated: “I was already in the hospital and at the last moment the surgery was canceled. Without any consideration, they told me, ‘We’ll see you again in 3 weeks’. I had carefully planned my business activities for this specific date and put a lot of effort into communicating with my suppliers and customers. So, I got very angry at that moment, whereas in a normal situation, I’m seldom or never angry.”

In the donor care process, information on the process and potential risks are strongly directed at the living kidney donor, and sometimes to the recipient of the donated organ. However, in the interviews, donors indicated that their social context, involving family, colleagues, and neighbors, often lacked accurate information. Donors indicated that those in their social network can also be anxious about risks, especially since many people have no idea what living kidney donation encompasses. Donor E: “My children were worried that I, being their mother, would not be in such a good shape after the donation. So, we had an explanatory conversation on this with the donation coordinator just before the surgery. That helped a lot. Looking back, we should have done this earlier.”

The majority of our interviewees had a long period, often many years, to get used to the idea of being a living kidney donor. The main reason for this was that the intended recipient’s illness often resulted in a slow decline of the kidney function before a transplant was appropriate. Donors received a lot of information on LKD, including brochures, oral information in the hospital, and links to numerous websites. An additional way of getting information that was mentioned by donors was to have contact with previous donors. We found that some donors had heard or read the stories shared by earlier donors. These contacts were highly appreciated and could be initiated in spontaneous meetings, for example in the waiting area of the hospital. Donor C: “I really appreciated contact with other donors. I also received a small book with donor stories and how they had experienced the kidney donor process.”

Donors are usually hospitalized in the surgical ward of the UMCG, where living donors are admitted both before and after the nephrectomy procedure. Due to COVID-related restrictions and personal preferences, for instance when a parent donates a kidney to a child, some donors were instead hospitalized on the nephrological ward of the UMCG, while still being under care of a surgeon. The nephrological ward, where the transplant recipients are also admitted, is located at a different place in the hospital, a walk of some 500 meters from the surgical ward. A number of donors experienced a lack of attention at this ward due to not being a kidney patient, seeing the ward’s daily routine being organized to take care of kidney patients. A practical example of this was given by donor a: “patients received an information folder during admission. When I asked at the front desk about my information folder it became clear that there were none for donors.

Although donors were content with how they were addressed by staff members, in some cases they felt unheard in face-to-face meetings. One example was given by donor C: “One consult with a professional was highly unpleasant. I did not feel respected, I felt vulnerable, and the professional seemed uninterested. I had a nasty feeling afterwards, which was in huge contrast with all my other contacts with the personnel of the UMCG.” Although such experiences were exceptions, nevertheless they are remembered. We noted that donors again and again stressed that the overall experience in the hospital was positive. Although negative personal experiences do occur and are potentially dissatisfiers, the consequence was not a dissatisfied donor.

Elements of personal service are highly appreciated. We found that donor experiences can be positively influenced by letting donors know that exceptions to the routine procedures are possible in case of personal circumstances or personal needs. For instance, donor B mentioned that, on their request, photographs could be taken during the surgery. This was important to the donor as the donor was an active volunteer and wanted to give information on LKD and use the pictures during presentations to share personal experiences as a donor. In another example, donor A stated that, although they were medically ready to be discharged by the hospital, they were allowed to stay a few more days because of personal circumstances: “This made me feel at ease again.”

There are differences in the time that donors need to recover, varying from weeks to months, and the issues they experience after the nephrectomy. One donor in our study indicated that they were still not fully being recovered more than a year after the donation. Some donors experience pain, others can be insecure as to what is normal. All have in common that they are admitted to the hospital in good health and leave the hospital in a reduced physical condition. Also, donors differ on their need for assistance to speed up the recovery process. Donor E said “I arrived in the hospital in perfect condition, when I left, I was in a poor condition. I would have preferred to get some help or be given suggestions on how to regain my good condition.” However, after a while, some felt insecure about which daily activities they could safely undertake again, such as running or working in the garden.

The transplant center offers different forms of medical follow-up once the donor has been discharged from the hospital. Follow-up includes checking on the donor by phone and, after some weeks, a medical check including an iothalamate-measured glomerular filtration rate (mGFR) for testing the kidney function (42). These tests are repeated after 5 and 10 years, as a service to donors who appreciate medical checks. Donors are also advised, in line with international living kidney donor guidelines, to undergo annual health checks, either in the hospital or by visiting their general practioner (GP) (43–45). Donors differed in their wishes regarding follow-up care. Donor F said: “Couldn’t we just visit a GP for check-ups, and should not we end the follow-ups when we are feeling okay?,” while donor A stated “I prefer check-ups in the UMCG, because they have all my medical records and they know me well.” We observed that, after a time, the surgery and the donation move into the background in the lives of the donors. In other words: life goes on. Shared decision-making could be important for donors in making the correct informed decisions on long-term check-ups.

Especially for donor-recipient couples and for donors who live alone it is important that they receive appropriate home care after the donation. Although the hospital tries to arrange seamless care with external homecare suppliers, this can go wrong. Donor G experienced this: “Home care was requested by the hospital, and I really needed it, I could not lift anything, not even a pan with a meal. However, although a six-week period of supportive home care was requested, I did not get any help at all.” The absence of home care makes daily-life immediately after arriving back home very difficult for donors and donor-recipient couples. Another donor did receive home care and highly appreciated this. Although home care providers are external organizations and it may be difficult to ensure a commitment, to donors it would be very helpful if the UMCG could be given priority when requesting home care.

In the Netherlands, transplant centers have full responsibility for the donor screening process and for all the steps involved, including mental and physical eligibility. However, donors might prefer an initial screening in a regional hospital closer to home. We observed a tension between the specialists’ desire for a highly professional matching process in the academic setting and the donor-service approach involving some regional prior testing that would be more convenient for the donor. Specialists were concerned that mismatched blood types between donor and recipient might cause a potential donor to be rejected by a regional hospital, whereas they knew that this incompatibility could in some cases be overcome with special treatment. Donor G explained the benefits of an initial regional screening, “I really appreciated that the first tests were undertaken in my own hospital. After that I was referred to the transplant center.” The upside of regional screening for the UMCG could be that potential donors who are clearly not suitable, for instance for sound medical reasons, are not unnecessarily referred to the UMCG. Therefore, aligning the services between regional hospitals and the UMCG could be beneficial for both hospitals and potential donors.

The healthcare system in the Netherlands is characterized by a prominent role being given to the general practitioner (GP). Some donors indicated that they did not experience adequate support from their GP when they experienced health issues after the LKD. Although GPs are informed about any kidney donations by patients registered at the GP practice, they do not always know how to react to medical concerns by kidney donors. For example, donor A was unnecessarily referred to a nephrologist in the transplant center by his GP. “In the consulting room the nephrologist was clearly surprised by the referral because my complaints were not related to the donation and I was asked ‘Why are you in our hospital?’, and I replied ‘My GP sent me.’.” Given the diversity among GPs, it may be difficult to organize adequate support and to develop the specialized knowledge needed, however donors would appreciate having a well-informed GP.

In addition, by listening to the donors’ stories and experiences, the interviews also resulted in many compliments from the donors toward the staff members involved in the entire cycle of kidney donation. All the donors were content with the way they were informed about the donation process and with the personal contacts with staff members during all stages of the donation procedure. Also, the easy accessibility of members of the transplant team, the practical information, and the specific information for getting financial compensation that was given to those who were employed or who were independent entrepreneurs were highly appreciated. Also, donors did experience that it was only a small step to make a phone call to the UMCG for some advice after returning home. Furthermore, all donors stated that they would donate again if necessary and no one regretted the decision to become a donor. We noticed that it also became clear that donors themselves can benefit from LKD as illustrated by donor G who stated “Now we can enjoy our lives together again.”

To gain an initial impression of which areas of potential improvement matter most, we also discussed priorities with donors. We found that priorities were determined by personal circumstances. For instance, for donor-recipient couples it was for home care. As a result, the ranking of priorities varied and at first all areas for improvement seemed equally important. Nevertheless, we concluded that careful communication at crucial moments, a personal approach, and advice on how to recover after surgery warranted the highest priority for donors because of the impact of these aspects on the overall experience. In addition, the professionals interviewed indicated that some suggested improvements would be complex to realize, such as organizing home care and support for the general practitioner because these health providers are external, independent organizations beyond the direct influence of the transplant center.

This study has some limitations that should be taken into account when interpreting the results. First, the study was conducted in a single large transplantation center in the Netherlands. The results of applying this adopted EBCD approach should be seen in this context. However, this also makes EBCD a powerful tool, because of the involvement of local professionals and patients, and several of the identified themes are universal such as ‘communication at crucial moments’. Second, the donors in our study all experienced a rather uneventful donation process without major complications whereas, in reality, a variety of medical complications can occur after kidney donation.

Despite these limitations, we were able to formulate several avenues for improving donor care that are very practical and may be of use in many hospitals across the transplant community. We used EBCD as an established method for improving patient care, and the use of storytelling proved to be an appropriate way to identify areas in the donor care pathway that could be improved (21, 26). The customized EBCD approach was useful in involving donors and professionals and may inspire care givers to broaden their view on how donors experience the donation process. We suggest two areas where future work could be beneficial: first, more research is needed on donor experiences and how to optimize these in different stages of the donor journey; and, second, seeking new ways to customize EBCD approaches such that they are less time and resource consuming but still lead to the ultimate goal: bringing users’ experiences to healthcare improvements.

The main lesson we learned is that really listening to the stories of patients and of donors can generate a lot of inspiring and practical ideas for improving care pathways. A customized version of EBCD would be a good starting point because experiences matter and this approach may bring healthcare to a more patient-engaged level to organize care based on ‘hearing the voice of the people served’ (50, 51).

In conclusion, this study shows that a customized EBCD approach can identify valuable and practical opportunities for improving patients’ experiences, and that some of these opportunities are relatively easy to implement.