Lack of urgency.

We noted a lack of any sense of urgency by patients with regard to completing PROMs because they already interacted intensely with their nurse and doctor. Interviewees felt that a lot of information was already being shared since they interact with their physician during their weekly dialysis sessions. They visit their centre three times a week for four hours and while there share personal and social information with their nurses as is illustrated by: “The most senior dialysis nurse normally connects the patient once every one or two weeks to the dialysis machine. That’s the moment to have a deeper conversation with their patient.” (nurse 6). Patients confirm this as one patient explained: “I expect little from this [discussing PROM feedback; WS]. I filled in the questionnaire because they asked me to, but we have the opportunity to speak with the doctor or head nurse every Monday.” (patient 6). Another patient confirmed this: “After connecting you [to the dialysis machine; WS] on Monday morning they always first ask: ‘Do you have anything you want to ask the doctor?’” (patient 8). The same patient had been told not to wait for any questionnaire if they had questions for the doctor. Further, one patient indicated that they expected the nurse and doctor to communicate with each other: “I presume that the nurse also helps prepare the information for the consultation …” (patient 5).

A nurse who had access to PROM results confirmed that PROMs do not necessarily bring new information to light: “We know the patients so well, to us they [PROMs; WS] offer little new information but it does make the conversation a little easier.” (nurse 2). Patients reported themselves to be to be fairly content with their current patient–doctor communications, and PROM questionnaires were not, or only slightly, perceived to contribute to improved communication. Finally, it was noted that unless doctors provide some follow-up to the questionnaire during a consultation it will be even more difficult to motivate patients to respond to the PROMs in the future: “There has to be a follow up, because when the doctor doesn´t discuss it, it´s a waste of our time and that of the patient.” (nurse 2). One patient explicitly remembered discussing the results with a specialized nurse: “Later on, I had a conversation about it with the specialized nurse. I got compliments that I maintained such a positive attitude.” (patient 7).

Questionnaire fatigue.

During the interviews, patients expressed hardly any real interest in an additional questionnaire. Both professionals and patients reported that questionnaires are part of everyday life for dialysis patients. A consequence of this was a low motivation to complete the PROM questionnaire: doctors and nurses had to put in serious efforts to motivate their patients to fill in the PROM questionnaire. Patient motivation is an issue for professionals as was well-illustrated by one doctor who stated: “The problem we have is that our patients are overwhelmed by all these questionnaires. They suffer from questionnaire fatigue. We really had to put some effort into this to motivate them to respond.” (doctor 3). However, most patients did not have strong objections to yet another questionnaire.

Patient characteristics and trust.

The willingness to complete the questionnaire also depends on patient characteristics such as age and critical attitude towards their doctor as was illustrated by a nurse: “Young and more opinionated patients say ‘I don’t agree, I’m not going to do this’ … the older generation do as the doctor says, the younger generation asks ‘why should I do this, what’s in it for me and what can I do with this?’. So yes, that’s different.” (nurse 2). We found that the willingness to share personal information, which is a part of PROM questionnaires, is also linked to the trust relationship between caregiver and patient. Low trust might hamper open communication between doctor and patient, as was illustrated by a patient who said: “For a few weeks now, I have a new doctor. My early experiences don’t encourage me to be more open. I don’t know him yet and I’m not going to tell him everything.” (patient 5). Another patient was very explicit about the importance of trust: “I’m here for dialysis but I had surgery eight years ago in another hospital. I go there once a year and I always tell more there than here. It’s a matter of trust. … Over there I have already had the same doctor for eight years. Here, it changes every time.” (patient 9). A nurse added that PROMs might be particularly helpful for patients who are not open in their communication due to their personality: “In my opinion. we have a group of communicative patients and a group that are more closed. To them this [PROMs; WS] may offer an opening.” (nurse 2).

Doubts: Are comparisons useful?

The aggregation of individual PROM data could help in comparing outcomes of different dialysis modalities—such as in-centre versus at-home dialysis—and to compare patient-reported outcomes between centres as an indicator of quality of care. To compare aggregated results needs enough data to be collected over time and a general acceptance of PROMs in the various centres. However, doctors are reluctant to accept the results of any comparisons, as a doctor explained “Whether my patients are doing better or worse than those in a hospital 100 kms from here? I don’t think that is relevant.” (doctor 2). One patient stated his feeling on this as follows: “I’m not interested in PROMS as quality indicators. I have my own personal support here and I feel at home here.” (patient 5). This illustrates the broader impression gained that patients are not very interested in outcome comparisons between dialysis centres. Although eager to improve healthcare practices, doctors did not consider aggregated PROMs as an adequate measure to compare the quality of medical care as was illustrated by one doctor stating: “I’m sure we will find some differences, however I don’t think this will be due to differences in the quality of care.” (doctor 4).

Doubts: Are comparisons feasible with large case-mix differences?

Doctors reported concerns on the feasibility of aggregation and comparison because of differences in the case-mix of patient groups. Professionals argued that case-mix differences are widespread across and within dialysis centres and goes beyond differences such as dialysis modality, age, causes of renal failure, social differences and occurrences of comorbidity. As one doctor emphasized: “I believe that if you make nationwide comparisons between centres, you should declare the academic hospitals as a special group and, even within them, there are differences.” (doctor 3).

Doctors, referring to the possible use of outcome differences by health insurers, stated: “Centres might develop a defensive attitude if that happens. Such as by only offering PROMs to their best patients.” (doctor 3) and “I think that would be dangerous. It’s so difficult to compare centres.” (doctor 6), another added “Our mortality rates are rather high.” (doctor 5). Improving care processes based on benchmarking, even though potentially attractive, was considered to be difficult if based solely on PROMs.

Doubts: Do aggregated PROMs reveal differences in HRQOL?

PROMs are often presented as a means to measure HRQOL, but doctors raised serious doubts regarding this during the interviews. PROMs might reveal something about the quality of care, as one doctor explained: “It is possible that, for instance, we’ll see differences in terms of a symptom such as cramp. That might say something about the quality of care.” (doctor 4). A nurse had a similar view: “Imagine we have low scores on the sexual functioning of our patients. In that case, we could ask ourselves ‘are we giving enough information?’ … ‘are we doing enough about it?’.” (nurse 4). However, there was a reluctance to use PROMs as an indicator of differences in the quality of life, and attributing this to better treatment in one centre than another: “Suppose we find a higher quality of life in medium-sized municipality A as compared to patients in a densely populated urban city environment B. So what? In B, there are many more patients with underlying social problems, such as lower incomes, a high percentage of immigrants and higher unemployment rates. These patients have more health issues. I don’t think you can blame healthcare for this.” (doctor 4). None of our interviewees expected any meaningful aggregated information from the PROM scores regarding HRQOL issues. This was illustrated by one doctor who argued: “The whole quality of life thing? We couldn’t even find differences between night and regular centre dialysis. And, in my experience, the first group tells me they feel better.” (doctor 4).

Doubts: The difficulties in following patients over time.

Collected PROMs data can not only be used for aggregation and comparison purposes but also to provide time series information on individual patients. Similar to time series data on medical laboratory results, it could be valuable to follow patients over time and adjust medical and supportive decisions accordingly. However, in order to do this using PROMs, doctors need patients to fill in the questionnaires on a regular basis. Here, although Nefrovisie recommends a distribution of dialysis PROMs, we found that in practice PROMs were only distributed among in-centre haemodialysis patients once a year prior to their scheduled annual extended consultation with a doctor. This was because professionals felt that the yearly consultation was the right moment to discuss the PROMs with their patients, “We want to distribute the PROM prior to the extended consultation, which is once a year.” (doctor 5). This low frequency may hinder the effective monitoring of patients over time.

Further, the professionals interviewed emphasized that the conditions of patients undergoing dialysis may well deteriorate over time and that changes in PROM results may not represent the quality of care but, rather, that a greater burden of symptoms may simply reflect their changing medical condition. An interesting aspect related to time-series data is that several doctors mentioned that the symptom burden experienced by patients, as measured by PROMs, can apparently improve while their medical conditions are worsening. They explained this phenomenon by the improved capabilities of patients to accept and cope with their situation. As a nurse described: “Our patients’ physical condition may deteriorate severely over time and still their quality of life score remains on the same high level (nurse 2).

Are dialysis doctors motivated?

Referring to the willingness of some colleagues, one doctor argued “Not every doctor invests in the annual extended consultation with their patient. … To put it bluntly, some nephrologists see dialysis treatment as a tick-box exercise.” (doctor 4). This doctor then explained that some colleagues do not consider dialysis as a very exciting and, for them, challenging form of treatment. PROMs are an addition to the doctor’s toolbox, and not all doctors are equally motivated to put in the extra effort required.

Are doctors able to adequately intervene?

Another challenge that arises is linked to doctor’s capabilities and core speciality. Some indicate they can perfectly well intervene on medical problems, but are not confident over what to do about other patient-reported complaints that go beyond their profession. This was clearly indicated by a doctor who said: “I think PROMs can be a problem for some doctors who will find it difficult to discuss complaints that they cannot do anything about. … Even to me this is a bit frustrating.” (doctor 3). Doctors could find it frustrating to ask people about complaints when they cannot offer any guidance, intervention or support. As another doctor mentioned: “A sexual condition can scare me off and I think ‘How can I help?’. The most common response is to refer to a urologist. … And the same with sombreness and depression.” (doctor 6). The tension between asking about symptoms and the perceived lack of treatment options, and the discomfort that then arises, was summarized as follows: “In my opinion, if we ask these things of patients, we also should offer them adequate follow up. I think we are still struggling with this.” (doctor 6).

Patients’ preferences and protocol conflict.

Professionals also reported a potential conflict with existing medical protocols. PROMs intend to give the patient a voice and more saying in the way they are treated. However, patients’ preferences may be in conflict with existing medical protocols. For instance, if patients were to indicate that their HRQOL improves with fewer dialysis treatments they may then ask doctors to deviate from the standard protocol of three four-hour sessions a week, where from a medical standpoint such a reduction would amount to inferior treatment. This potential conflict was clearly expressed by a nurse: “We are assessed on achieving good lab results, but maybe the patient only wants to undergo dialysis twice a week and this improves his quality of life. In terms of the visitation review, we are doing a bad job–but the patient is happier. We have many patients who really do not want a shunt to dialyse, they prefer a jugular catheter. This places us in a bad situation regarding professional guidelines that prescribe the maximum percentage of patients with a jugular catheter.” (nurse 2). Here, it is important to note that compliance with protocols is safeguarded through external visitations. As a result, nursing staff who are in many cases responsible for distributing PROMs and motivate patients to respond, might be reluctant to do so if they feel that PROM results may not lead to changes in treatment and that patient preferences are disregarded due to protocol restrictions.

Procedural growing pains.

Several centres started enthusiastically, quickly giving PROMs to all of their patients. However, they soon discovered that this procedure could be improved because the conditions of some patients could change in the considerable period that elapsed between answering the PROM questions and their scheduled annual consultation such that the PROM results were no longer adequate. In addition, some centres felt they had to think carefully about other PROM routing issues such as distributing them twice a year might consequently double the number of extended consultations to also twice a year. The PROM might also lead to changing the timing of the annual consultation to before or after the annual multidisciplinary team meeting where patients’ conditions are discussed within a team of various disciplines.

It was also discussed during the early implementations whether a nurse should also attend the yearly consultation with the doctor and the patient, because the implementations had revealed that nurses being present might also help improve communication. A nurse described how it could be logistically difficult to distribute PROMs twice a year: “We currently combine it with the annual consultation, and it cannot be right that, a second time, the PROM is not discussed with the patient.. . . That still puzzles us.. . . Maybe we just have to decide to keep it to once a year.” (nurse 2). All these possible adjustments to existing routines brought their own planning questions. Overall, the early implementation stage was seen by several of the professional respondents as a learning experience in how to deal with the procedures.

Not only the doctor, but the whole team is needed.

Although PROMs are a tool to enhance communication between patient and doctor, interviewees described how, to make this possible, the whole dialysis centre team has to be involved in the implementation process. Both doctors and nurses indicated that the efforts necessary to get PROMs distributed and returned are mostly put in by nursing staff and the secretariat who, as recognized by the doctors, already have a high workload: “It doesn’t take much time from me, but the secretary staff and the nurses, yes it takes them extra time and, nowadays, their workload is already quite high.” (doctor 2). The dialysis team as a whole is reported to be crucial to PROM implementation and it was also described how a larger team needs more effort in terms of coordination and motivation to handle the implementation. “All personnel have to be involved if you are striving for a good end result. Knowing my department, I think we will manage this. We only have a small team, which is convenient.” (doctor 1). Furthermore, as the doctor explained, the demands on a centre’s team can be more complex due to factors such as having multiple locations and a high employee turnover: “A big dialysis centre with more locations, well … then you would need a more structured approach and you have to train all those teams.” (doctor 1).

Nursing staff: Pain but no gain.

Although the importance of nursing staff when working with PROMs was widely recognized by the doctors, several nurses still reported that the information generated by PROMs is often only seen by doctors and patients, with nursing staff being excluded. Some saw this as somewhat unjust as nurses are very close to the patients and spend up to 12 hours a week with them, much longer than the doctors. Further, the non-coded information that nurses gather during dialysis treatment could be valuable but is not normally considered during the annual consultation. Nurses know a lot about individual patients, but this information is not systematically used, as a nurse explains: “I have never noticed that doctors asked us as nurses how we see things. It happens in the multidisciplinary meeting, but by then the annual consultation has already taken place.” (nurse 6). Although this does not directly affect PROM implementation, a feeling of being excluded is not very motivating.

Interference from external and internal turmoil.

In terms of organizational barriers, the professionals interviewed described that mergers, rapid changes in personnel, organizational turmoil, an overload of projects and organizational changes can all interfere with PROM implementation. The timing of the implementation project is therefore important and can be disrupted by external or internal turmoil. One doctor explained this as follows: “I have to motivate colleagues to work with this [PROMs; WS] so I must create acceptance and, even when people change jobs and functions during changing alliances, we have to continue our way of working.. . . Especially in these times with a lot of turmoil [a relocation of the department; WS] I believe that good projects can die because they are started at the wrong moment. To me this is a concern.” (doctor 5).

Inevitable IT nonalignment.

Finally, as part of the operational barriers, interviewees reported that workflow difficulties were arising from the fact that the centre’s dialysis patients’ medical records and the PROM results were kept in a dedicated IT system called Diamant. Interviewees indicated that although results were available in Diamant they could not be accessed through the electronic health record (EHR) system used by the wider hospital. This was an issue because, during the annual consultation, doctors were required to use the EHR system, and not Diamant. As a consequence, these two systems were being used in parallel, increasing the workload when working with PROM responses. A nurse stressed the need for information integration: “We are now printing the digital [PROM; WS] file and then scanning it for insertion into the EHR.” (nurse 2). This was supported by a doctor stating: “A connection with our EHR system would be great” and “At the moment it brings additional paperwork, if I want PROM results in the EHR I have to retype them so to speak.” (doctor 2). To address this problem, sometimes PROM data are printed out and delivered to the doctor manually. For the short-term, doctors see this as somewhat acceptable, but in the long-term they indicate that this cannot continue because it is too complex and time consuming for everyday routines.

Involving professionals as implementers.

Once the decision had been made to use PROMs, we found that organizing the PROM implementation could be done by a project team with a few interested colleagues, quality assurance nurses or secretariat staff in cooperation with a nephrologist. Having preparations made by one or two coordinators, rather than doctors, can facilitate the daily use of PROMs in practice. The interviews revealed that the coordinator could for instance be a nurse who already has responsibilities in the field of quality assurance or is following a career path where the coordination of PROM implementation is part of a study trajectory. As one nurse described: “It was decided [PROM implementation; WS]. We just had to implement it. Because I am studying to become a quality assurance nurse I thought it would be perfect to choose this as a topic for my thesis.” (nurse 6). During some of the interviews, it was described how the coordinator, a healthcare professional, managed all the preparatory operations such as the distribution of PROMs, staff training and motivation in cooperation with the centre’s management team. The planning and distribution of PROMs support was arranged by a central point in the various dialysis centres, for instance by a secretary or support staff such as a quality manager or nurse.

Best practices and lessons from previous experience.

Respondents argued that implementation was also facilitated by having insights into ‘best practices’ and learning about implementation and daily use of PROMs from other centres. As one nurse explained: “Of course I use the Nefrovisie website and I read a lot there. When I’m sitting at home and I’m scrolling then I think, ‘yeah, that’s also a good idea’. … This is very convenient and useful to me. I like it.” (nurse 6). Gathering information was reported as being done directly, by mail or phone, or by dedicated newsletters from Nefrovisie. Earlier experiences with PROMs, for instance in a pilot setting, also helped to develop the appropriate operational procedures. Such experience was argued to be a motivation because it showed that the time and effort necessary to implement PROMs were worthwhile. One centre had already been using a similar questionnaire and the switch to this PROM set was not perceived to be a major change. This was explained by a nurse when explaining the switch from their original questionnaire to PROMs: “Yes, that helps of course, because it already felt familiar. The procedure was already known, so in fact not much has changed.” (nurse 4).

One doctor, talking about earlier experiences during a pilot study with the PROMs, said: “When discussing the pilot PROM results with patients I found it very informative that patients have more complaints below the surface than those I discovered during regular visits.” (doctor 1). A very practical lesson that could be learnt from other centres is that a high response rate is not easy to achieve without hard work by the whole team. A doctor explained: “We had a very high response rate, but you really have to make an effort for this. These [dialysis patients; WS] are patients who usually are very tired, make many visits to the hospital and we already ask a lot of them. So, if they don’t see the benefits then it is very hard to get a response.” (doctor 2). The key to achieving a high response rate from patients, as argued by the doctor, was persistency in urging patients to return the PROMs. Another potential lesson is that PROMs are a practical tool that is not difficult to use. Here, several coordinators, nephrologists and patients reported that the questionnaire is easy to understand and easy to complete, with neither patients nor doctors reporting high barriers that had to be overcome to interpret the results.

Organizing support for patients with low health literacy skills.

A doctor explained that some patients may have difficulties with the questionnaire, and require special attention and support: “In particular, the patient who finds this difficult is the patient that also has difficulties expressing himself to the doctor. … It often seems that this type of patient says they are feeling okay but, in reality, there is much more to it.” (doctor 2). It was also argued that it was particularly reluctant or poor literacy patients that needed to be involved because they were the most likely to surprise their doctor with new information they had not shared before.

Respondents described several preparatory activities that could achieve a higher response rate. These involved preparing to help and support patients in completing the questionnaires, linking the annual anamnesis assessment that has some of the same questions with PROMs, providing material support such as tablets, and giving patients the freedom of choice as to where and when they respond, either at home or during dialysis. A patient commented on this: “At home I feel more at ease. (..) I do know how to use a computer but I’m not a freak. Settings are always a bit different and I’m more comfortable when I use my own computer.”(patient 3). With regard to the PROM questionnaire itself, some respondents indicated that PROMs are a practical tool and in practice could replace existing, more complex, questionnaires. This was well illustrated by one coordinator who stated: “We were looking for a method to be more patient-oriented. … We started looking at the positive health perspective and we were almost ready to introduce this but, then, PROMs came along–a beautiful solution specifically targeted at our patient group.” (nurse 1).

Learning to assess patient responses.

Professionals indicated that increasing experience with using PROMs helps them in understanding patients’ responses, intervention options, possibilities for in-centre comparisons and differences in symptoms between centres. One doctor explained this as follows: “I think that’s a matter of experience. An item score of 15 or 30 means nothing to me but, at some moment, when you use questionnaires more often, then you master it yourself.” (doctor 6). These possibilities may develop over time as more centres and more patients participate provided there is an adequate learning community among professionals and an active exchange of ideas, experience and knowledge. One patient also described this learning curve, illustrating that patients may also need some time to learn: “At first we were thinking ‘what’s this, all these questions?’. And then we filled them in, and we checked the scores. And well, it is a good thing to do this once.” (patient 7). However, the same patient was not enthusiastic about the idea of a repeated questionnaire: “If they would ask me again, I would say: no, rather not.” (patient 7).

The power of using one standard PROM set in dialysis.

It was argued that a necessary condition of learning as a professional group is to use the same PROM set across all related centres. As a doctor explained: “It would be nicer if we all used the same questionnaire in haemodialysis and other CKD treatments, used it in the same way and built experience in the same way. … At the moment, similar things are worked with, in many isolated situations. That is not necessarily wrong but, if we really want to do something with it in the Dutch nephrology scene, then joint actions would really be better.” (doctor 6). The acceptance of the new standard dialysis set thus enhances the use of a single PROM set and discourages the development of ‘local PROMs’.

Openness to share PROM experiences.

Although the use of a standard set enhances the possibility of exchanging experiences, the willingness and openness of doctors to share their experiences through the use of PROMs is also a necessity as was argued by a doctor: “We have to share these experiences in national task groups and at congresses.” (doctor 5). Patients also appeared willing to share information, not for themselves but for improving care for other patients. Participating in research, such as in the study at hand, may give patients a sense of contributing to the healthcare community. One patient in explaining their motivation for completing questionnaires stated: “I always say, I’m learning from it, but also for another.” (patient 3). Another, to us unexpected, benefit from PROMs is that one patient discussed the PROM results with a family member. In this instance, the PROM results helped the patient share the information that was presented with family, and this helped to reach a better understanding: “What I liked was that afterwards [on returning the PROM; WS] I could print the results. … I mean, you are always talking about these things but now it’s on paper. … And my sister told me, what you have filled in and what your scores are, that’s exactly right.” (patient 7).

Easy-to-use product.

Related to the PROM set product itself, our interviews suggested that the introduced dialysis PROM set, co-designed with patient involvement and doctors, was ready to go: that it was easy to use, without extensive paperwork due to the digital approach, not too many questions but comprehensive and balanced. Both patients and doctors considered the PROM set to be very practical despite the efforts that still have to be made to actually put them into practice. One patient said “I think the list was extensive, but it wasn’t difficult” (patient 12). In addition on completeness and ease of use of the PROM set: “I think they are very complete. (..) And also I feel they are easy to fill in.” (nurse 2)

Receiving instant feedback.

After completing the questionnaire and hitting the Submit button, results are reported back to patients in a matter of seconds, including their overall benchmark in relation to other patients and the wider Dutch population. The professionals in our study said that patients had indicated that this motivates them to respond, and doctors and nurses see this as a positive attribute. As a nurse described, patients appreciate this instant feedback on their questionnaire: “The beauty is, also for the patient, that they get their report straight away, all in colours, which is very convenient.” (nurse 3). The value of instant feedback was also described by a patient who had very thoroughly filled in the questionnaire and studied the outcomes. This patient paid attention to individual scores on the item list and to the average at the end of the questionnaire. The patient was not surprised by the results, but appreciated the confirmation given by the PROM results: “I found it useful. I already knew I’m physically not in good shape. … I mean, you always talk about it, and now it’s crystal clear on paper.” (patient 7).

PROMs as a practical tool and time saver.

Doctors indicated that they regarded PROMs as a practical tool to support their consultation with patients. It helps them to gain a more structured insight into patients’ troubles, complaints and symptoms, and that this was a motivator to implement PROMs. Doctors informed that using PROMs helps them to broaden the consultation with regard to topics discussed. PROMs are also a time saver: they help doctors focus more effectively on the problems that patients themselves report. One doctor said about working with PROMs: “I believe them to be a beautiful tool to use during a consultation. … I see immediately the topics that I don’t need to ask about anymore. As in ‘are you having complaints about …?’ … I can immediately focus on the complaints that patients have reported, which is a great opening for further discussion. It doesn’t cost any time and I can directly aim to talk about relevant complaints.” (doctor 2).

Results are used alongside lab results on phosphate, haemoglobin, parathyroid hormone levels etc. The balance may vary with age as one doctor indicated: “These [lab results; WS] are especially important for patients with a reasonable life expectancy but, obviously, we treat many elderly patients with a lower life expectancy and especially to them the quality of life is very important.. . . A phosphate level of 2.0 or 1.7 doesn’t make much difference. Here, it is more important how this patient experiences his wellbeing. … And for me, what can I do to improve his life for the time he has left?” (doctor 2). Here, this doctor was demonstrating how PROMs are an aid to discuss issues that go beyond lab results for a specific patient group.

Easy handling and better consultations.

PROMs are considered to be complete and are balanced to the extent that they are easy to work with and ask the right questions. Some questions might be added, but it is recognized that this would complicate the questionnaire. Doctors expect the quality of their annual consultations with in-centre dialysis patients to improve because of the use of PROMs. They also indicate that it especially helps when patients become actively involved and adopt an active communicative attitude. Operational fluency is also enhanced by the easy connection between Nefrovisie-Renine and Diamant. As a secretary put it: “I just have to press ‘save as’ to save the PROM pdf file from Nefrovisie-Renine in Diamant. … A matter of only a few small steps.” (secretary 1).

A shared view on patient involvement.

A positive contextual element, related to the work environment of doctors, is having a shared view on patient involvement, both within the professional group of nephrologists and within a centre’s nursing team. This is not only regarding the PROMs, which can be considered to be a tool, but also regarding what the PROM set represents: another way of treating patients–with active patient involvement, shared decision making and more attention to non-medical issues. A nurse gave the following argument: “It’s different. It’s another way of how we work, another way of gathering information and getting different information. Not just medical, but also psychosocial. Yes, I believe this is very important.” (nurse 6). A doctor confirmed: “This is of course a topical issue nationwide, the whole issue that patients should have more say in their treatment. In many professional groups, you notice that PROMs are growing in importance. In my opinion this was not yet the case five years ago.” (doctor 2). Just like the doctors, the nursing staff also have an open attitude to embracing active patient involvement and this enhances the implementation of PROMs.

Clear leadership.

Further, the interviews indicated that clear leadership has a positive effect. Here, firm statements at the beginning of the implementation process like ‘we are going to do this’ helps staff to accept PROMs and stresses the fact that PROMS are considered essential for the centre’s dialysis care. As a coordinating nurse stated: “There was no choice whether personnel would accept it or not. So, we are just going to do this. Some people see the benefits, others don’t and consider it to be nonsense. Well, come on. It just has to be done.” (nurse 2). This firmness may even be transmitted to patients: doctors might say ‘this is important, so I strongly advise you to fill in this new questionnaire, it helps with your treatment’. One doctor was very firm on this: “Some [patients; WS] did not respond and then we said: ‘Here is an iPad and you are just going to fill in the questionnaire’, actually being very directive, and ‘I am going to tell you the results.’.” (doctor 3).

Management support.

Interviewees mentioned that acquiring the extra capacity to organize the introduction of PROMs, set up procedures, motivate colleagues and facilitate patients and staff takes time. Management support for this helps in succeeding. This support came from the management of the centre and not from the top management in the hospital. Several interviewees indicated that top management played no role in the implementation of PROMs, such as a nurse who stated: “We [dialysis centre; WS] are an island within the hospital. We do something because we think it is important.” (nurse 4). This finding indicates that dialysis centres are rather autonomous when it comes to decision-making.