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Patient-centred medicine
Original research
Discussing results of patient-reported outcome measures (PROMs) between patients and healthcare professionals in routine dialysis care: a qualitative study
  1. Esmee M van der Willik1,
  2. Jet Milders1,
  3. Johannes A J Bart2,
  4. Willem Jan W Bos3,4,
  5. Frans J van Ittersum5,
  6. Marc A G J ten Dam6,7,
  7. Marc H Hemmelder8,
  8. Friedo W Dekker1,
  9. Yvette Meuleman1
  1. 1Department of Clinical Epidemiology, Leiden University Medical Center, Leiden, The Netherlands
  2. 2Dutch Kidney Patients Association, Bussum, The Netherlands
  3. 3Department of Nephrology, Leiden University Medical Center, Leiden, The Netherlands
  4. 4Department of Internal Medicine, St Antonius Hospital, Nieuwegein, The Netherlands
  5. 5Department of Nephrology, Amsterdam University Medical Center, Amsterdam, The Netherlands
  6. 6Nefrovisie Foundation, Utrecht, The Netherlands
  7. 7Department of Internal Medicine, Canisius Wilhelmina Hospital, Nijmegen, The Netherlands
  8. 8Department of Internal Medicine, Maastricht University Medical Center, Maastricht, The Netherlands
  1. Correspondence to Esmee M van der Willik; e.m.van_der_Willik{at}lumc.nl

Abstract

Objectives Patient-reported outcome measures (PROMs) provide insight into patients’ experienced health and needs, and can improve patient–professional communication. However, little is known about how to discuss PROM results. This study aimed to provide in-depth knowledge of patients’ and healthcare professionals’ experiences with and perspectives on discussing PROM results as part of routine dialysis care.

Design A qualitative study was performed using an interpretive description approach. Individual semistructured interviews were conducted with 22 patients and healthcare professionals. Interviews focused on general and specific situations (eg, addressing sensitive topics or when no medical treatment is available). Interviews were transcribed verbatim and analysed inductively using thematic analysis.

Setting Participants were purposively sampled from eight dialysis centres across the Netherlands.

Participants Interviews were conducted with 10 patients receiving dialysis treatment and 12 healthcare professionals (nephrologists and nurses).

Results Patients and healthcare professionals provided practical guidance for optimal discussion about PROM results. First, patients and healthcare professionals emphasised that PROM results should always be discussed and indicated how to create a suitable setting, adequately prepare, deal with time constraints and use PROMs as a tool for personalised holistic consultations. Second, patients should actively participate and healthcare professionals should take a guiding role. A trusting patient–professional relationship was considered a prerequisite and patient–professional interaction was described as a collaboration in which both contribute their knowledge, experiences and ideas. Third, follow-up after discussing PROM results was considered important, including evaluations and actions (eg, symptom management) structurally embedded into the multidisciplinary treatment process. These general themes also applied to the specific situations, for example: results should also be discussed when no medical treatment is available. Though, healthcare professionals were expected to take more initiative and a leading role when discussing sensitive topics.

Conclusions This study provides insight into how to organise and conduct conversations about PROM results and lays the foundation for training healthcare professionals to optimally discuss PROM results in routine nephrology care. Further research is needed to provide guidance on follow-up actions in response to specific PROM results.

  • QUALITATIVE RESEARCH
  • MEDICAL EDUCATION & TRAINING
  • SOCIAL MEDICINE
  • Dialysis
  • Quality in health care

Data availability statement

Data are available on reasonable request. Contact information: Friedo W Dekker (F.W.Dekker@lumc.nl).

http://creativecommons.org/licenses/by-nc/4.0/

This is an open access article distributed in accordance with the Creative Commons Attribution Non Commercial (CC BY-NC 4.0) license, which permits others to distribute, remix, adapt, build upon this work non-commercially, and license their derivative works on different terms, provided the original work is properly cited, appropriate credit is given, any changes made indicated, and the use is non-commercial. See: http://creativecommons.org/licenses/by-nc/4.0/.

https://doi.org/10.1136/bmjopen-2022-067044

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    STRENGTHS AND LIMITATIONS OF THIS STUDY

    • Semistructured interviews elucidated in-depth knowledge of the optimal way to discuss patient-reported outcome measure (PROM) results, filling this knowledge gap in the published literature.

    • Participating patients and healthcare professionals had experience with using PROMs in routine (chronic) care setting, resulting in practical guidance that is directly applicable to real-world practice.

    • Robustness of the results was demonstrated by exploring specific situations (eg, addressing sensitive topics) in addition to the general context.

    • Despite efforts to achieve heterogeneous samples, the results are shaped by people who are willing to participate, which may limit the transferability of the findings.

    • Researchers’ experiences and preconceptions may have coloured the results (ie, research reflexivity), even though multiple researchers with different backgrounds have performed interviews and interpreted data.

    Introduction

    People with advanced chronic kidney disease (CKD) experience numerous physical and emotional disease-related symptoms, which have a major impact on their lives and health-related quality of life (HRQOL).1–3 Although HRQOL and symptom burden have been regarded as highly important by patients and healthcare professionals,4–6 these outcomes often remain undiscussed and un(der)treated in regular practice.3 6 7 This may in part be explained by the fact that patients do not share everything by themselves, for instance, because they do not talk easily about sensitive topics or assume their symptoms are not CKD related or cannot be treated.8–10 In addition, healthcare professionals may consider it challenging to inquire about patients’ wide range of symptoms and needs, for example, due to time limitations, and remain largely unaware of symptom burden.7 11

    Patient-reported outcome measures (PROMs) are questionnaires that assess aspects of patients’ perceived health, such as HRQOL and symptom burden, and are reported by the patients themselves.12 PROMs can play an important role in solving the under-recognition of patient-relevant outcomes by providing insight into and facilitating communication about patients’ HRQOL, symptoms and needs.2 7 13–16 Integration of PROMs into routine care has the potential to contribute to a more person-centred approach, incorporating patients’ experiences and needs complementary to traditional clinical measures. This provides patients and healthcare professionals with a more complete perspective on how the patient is really doing and could enhance shared decision-making about treatment choices.2 13–18

    In the Netherlands, PROMs are implemented into routine dialysis care since 2018.2 Patients are invited 1–2 times a year by their care team to complete PROMs on symptom burden and HRQOL.2 19 After completing PROMs, patients and healthcare professionals receive a patient’s individual PROM report and are encouraged to discuss PROM results during the upcoming consultation.2 Previous research suggests that using PROMs facilitates patient–professional communication by providing overview and insights, and by prompting discussions about topics that are important to patients.2 20 However, it also reveals several challenges in organisation and conversations about PROM results, including: lack of incorporation of PROM results into electronic health records, limited time during consultations and lack of knowledge on how to interpret and discuss PROM results.21–25 PROMs are relatively new in routine dialysis care, and although research emphasises the need to discuss PROM results, little is known about the most optimal way to have this conversation.2 14 26 Therefore, this study aims to provide in-depth knowledge of patients’ and healthcare professionals’ experiences with and perspectives on discussing PROM results as part of routine dialysis care.

    Methods

    Design and participants

    A qualitative study was performed using an interpretive description approach. An interpretive description methodology captures the experiences and perspectives from practice, and intends to gain a deep understanding of the topic at hand and to generate knowledge that can enhance clinical practice.27–29 Individual semistructured interviews were conducted between April and September 2021, with patients receiving dialysis treatment and healthcare professionals involved in dialysis care—all experienced with completing and discussing PROM results. Purposive sampling was applied to capture perspectives from a heterogeneous patient sample based on age, gender and dialysis modality (haemodialysis (HD) or peritoneal dialysis (PD)) and healthcare professional sample based on age, gender and occupation (nephrologists and nurses). Participants were recruited from eight dialysis centres across the Netherlands (Provinces Gelderland, Noord Brabant, Noord Holland, Overijssel, Zuid Holland, Utrecht) participating in the Dutch PROMs registry. Healthcare professionals were recruited through the researcher (EMvdW) and patients through their care team, until data saturation was reached (ie, when little or no new concepts arose from subsequent interviews).30 All participants received written study-information and provided written informed consent. Recommended guidelines and checklists (eg, the COnsolidated criteria for REporting Qualitative research) were used to conduct and report this study.31 32

    Interview and data collection

    An interview guide (online supplemental table S1) was developed based on previous research,2 6 14 23 26 discussion among the research team and in collaboration with four patients from regional and national kidney patients associations (Diavaria and NVN). Individual interviews were performed through videocalls (Zoom)33 or by telephone for patients without access or skills to use electronic devices. Interviews were carried out by two female researchers: EMvdW (health scientist, PhD candidate) and JM (medical scientist, PhD candidate), who were trained by an experienced qualitative researcher, YM (medical psychologist, PhD). No relationship existed between participants and interviewers. Interviews were digitally recorded and field notes on non-verbal communication were made.

    Prior to interviews, participants completed a brief questionnaire to collect sociodemographic information. In addition, patients completed the PROMs used in Dutch dialysis care2: 12-item Short Form Health Survey34 to assess generic HRQOL and Dialysis Symptom Index19 35 to assess CKD-specific symptom burden. Patients received their personal PROM report and healthcare professionals received a mock PROM report.

    During the interviews, participants were asked about: experiences with and perspectives on optimal ways to discuss PROM results (part A), and perspectives on dealing with specific situations that might complicate discussions about PROM results (part B). All questions were open-ended and responses were further explored using additional questions and probes. Participants received a summary of the main findings at the end of the study.

    Analysis

    Interviews were transcribed verbatim. Transcripts were analysed inductively using thematic analysis.36 37 Open line-by-line coding of transcripts was done by two researchers (EMvdW and JM). Coding strategies and interpretations were discussed with a third researcher (YM) to ensure consistency. Subsequent analyses were performed in two parts. Part A: experiences and perspectives on optimal ways to discuss PROM results were analysed. Axial coding was applied by constant comparison, grouping similar concepts into themes and organising them hierarchically. Preliminary themes were discussed within the multidisciplinary research team to ensure triangulation. Part B: data about specific situations were compared with identified themes from part A; in other words, did the same or different themes apply to these specific situations? Analyses were performed using Atlas.ti (Atlas, Berlin, V.9). Finally, illustrative quotes were selected and translated from Dutch to English by one researcher (JM) and translated back (ie, from English to Dutch) by a second researcher (EMvdW) to ensure accuracy.

    Patient and public involvement

    Four patients from regional and national kidney patients associations (Diavaria and NVN) were involved in the development of the interview guide. One patient representative (JAJB) is part of the research team and was involved in designing the study, interpreting the results and revising the manuscript.

    Results

    Participant and interview characteristics

    All characteristics are shown in table 1. In total, 22 interviews were conducted with 10 patients and 12 healthcare professionals. Interviews lasted on average 61±15 min. Patients’ mean age was 62±15 years, half of them was male, seven patients received HD and three PD. Eight nephrologists and four nurses participated, with a mean age of 52±7 years and four of them were male.

    View this table:
    Table 1

    Participant* and interview characteristics

    Part A: experiences and perspectives on optimal ways to discuss PROM results

    Three overarching themes were identified and will be discussed below, with corresponding subthemes and illustrative quotations. Additional quotations are provided in table 2 .

    View this table:
    Table 2

    Illustrative quotations of patients and healthcare professionals for identified themes and subthemes (part A)

    1. Theme 1: Organisation and basic principles of discussing PROM results

    Patients and healthcare professionals described experiences and advised on how to organise conversations about PROM results, such as organising a suitable setting, adequate preparation and dealing with time constraints. In addition, they described that PROMs should be considered a tool for personalised holistic consultations and PROM results should always be discussed.

    1.1 Suitable setting for discussing PROM results

    Patients and healthcare professionals gave a univocal description of how conversations about PROM results should be organised. First, PROM results should be available on time: they recommended to invite patients to complete PROMs 2–6 weeks in advance and announce that PROM results will be discussed, in what way and for what purpose, to ensure patients do not think ‘nothing is being done with it’. Second, patients and healthcare professionals stated that PROM results should be discussed face to face in a consultation room that ensures a safe and private setting. PROM results were mostly discussed during annual consultations, which was considered very suitable. They advised that patients discuss PROM results with the nephrologist or nurse who knows the patient best. Many recommended to invite the patient’s partner or a close relative, as this may provide valuable insights for all attendees. Third, all patients and healthcare professionals considered a conversation about PROM results once per year sufficient. Some patients and healthcare professionals suggested to schedule additional conversations when many symptoms or important changes in treatment or health occur.

    1.2 Preparations by patients and healthcare professionals

    All patients and healthcare professionals advised that both prepare for conversations about PROM results. They suggested that patients think beforehand about their own results, whether they have questions, and what they would like to discuss and receive support on. They advised healthcare professionals to examine which topics emerge from the PROM results and which treatment options are available; this helps to inform patients and quickly get to what is important to them:

    You should not open the list when you are already there with your patient. Take some time to prepare it, to discuss it, and then it really is an addition to the annual consultation. (Nurse/50-60y)

    In addition, healthcare professionals indicated that they always prepared discussions on PROM results. Patients and healthcare professionals indicated that in practice patients often did not prepare, for example, because it was not clear to patients that, when and how PROM results would be discussed.

    1.3 Dealing with time constraints

    Most healthcare professionals and some patients experienced time constraints. Often, more topics emerged from PROMs than can be discussed during one consultation. Healthcare professionals indicated that they solve this by prioritising and focusing on the most important 3–4 topics, identified by patients or themselves. Some healthcare professionals indicated that PROMs also save time, because you get to the point more quickly: more information is gained, but with PROMs there is no need to spend time asking questions about symptoms that patients do not have:

    People who use PROMs are especially happy that they can work in a more focused way and that they do not lose time. (Nephrologist/50-60y)

    1.4 PROMs as tool for personalised holistic consultations

    Many healthcare professionals and some patients argued that PROMs are a tool to improve communication during consultations:

    Discussing PROM-results is not an aim in itself, it is a tool to conduct the conversation well and to do justice to what is important to the patient. (Nephrologist/40-50y)

    Many patients and healthcare professionals stated that using PROMs during consultations helped to focus on what is important to patients. They shared that PROM results can serve as a ‘conversation-starter’ to discuss topics that were otherwise not brought up—PROM topics but also overarching topics such as treatment continuation or death. In addition, some patients and healthcare professionals described that PROM results can stimulate self-reflection and awareness in patients, which may result in better understanding and confirmation of their experienced health, although it can also be confronting:

    At times I find it difficult to hear that my condition is less good than that of a seventy-eighty year old. On the other hand, it is also something that I clearly run into: it really bothers me more than others, so it also validates that I didn’t just make it up. (Patient/30-40y)

    Furthermore, many healthcare professionals and some patients indicated that the overview of PROM results and comparison of scores with other dialysis patients, provides a sense of ‘how someone is doing’ and insight into ‘what is normal’. Some of them emphasised that this comparison should only be used as a tool to better understand PROM results, and not as a grade or treatment target. Although most patients and healthcare professionals indicated that using PROMs provided a more complete picture, many healthcare professionals also mentioned technical barriers: PROM results are not yet integrated into electronic health records, which makes it more challenging to get a complete overview in combination with biomedical results and to evaluate changes over time. Implementation into electronic health records was considered an important next step to support personalised holistic consultations.

    1.5 Always discuss PROM results

    Almost all patients and healthcare professionals indicated that discussing PROM results is essential, and some even argued that PROMs should only be collected on condition that results are discussed:

    If you have indicated that you experience certain problems, then it must be discussed, otherwise such a questionnaire is useless. (Patient/60-70y)

    Many patients and healthcare professionals indicated that discussing PROM results is important ‘to make clear that everything can be discussed, now or at any given moment’, and that there is an opportunity to start a conversation about it. Furthermore, patients and healthcare professionals indicated that discussing PROM results in itself, can already help: patients do not always expect or want something to be done about symptoms, but they do sometimes want to talk about it with their healthcare professional—to inform them or to feel seen, heard and understood by them:

    A listening ear from the doctor is most important. Whatever complaint you have, it can be small for the doctor, but big for you. That you are taken seriously. (Patient/60-70y)

    In addition, patients and healthcare professionals indicated that explanation and clarity (eg, about causes, prognosis and treatment options for symptoms) is important for patients, because better understanding can help to accept and cope with the disease.

    2. Theme 2: Roles of and interaction between patients and healthcare professionals

    Patients and healthcare professionals described the patient’s role as active participant and the healthcare professional’s role as guide. They indicated that a trusting patient–professional relationship is a requirement and affects what conversations about PROM results yields. They described the interaction as a collaboration and considered this the optimal approach.

    2.1 Patient’s role: active participant

    Patients and healthcare professionals described the patient’s role as active participant in the discussion. Healthcare professionals would like patients to take more control when it comes to PROM results, but acknowledged that this is not easy for all patients. Contrary, most patients indicated that they usually wait for the healthcare professionals’ initiative: even when they feel empowered enough to articulate their experiences and needs, they believe it is not their role to bring up PROM results or to structure conversations:

    During a consultation, I think I will feel empowered enough to take the initiative. But still, the doctor needs to give you enough space to do something with it. (Patient/60-70y)

    Both patients and healthcare professionals indicated that, ultimately, patients decide whether or not something is discussed and follow-up actions are taken.

    2.2 Healthcare professional’s role: guide

    Patients and healthcare professionals described a guiding role for healthcare professionals in taking initiative and providing structure in PROM results conversations. Healthcare professionals are expected to ask patients to expand on their experiences and needs to gain a deeper understanding, and to facilitate prioritising outcomes and actions. Some healthcare professionals indicated that they would prefer to be less steering in conversations and find it challenging to facilitate rather than direct conversations, especially when patients have a ‘wait-and-see’ attitude. Patients indicated they are used to the healthcare professionals’ leading role and this also worked well in discussing PROM results:

    The healthcare professional should facilitate and guide the conversation. So take someone by the hand and ask questions. (Patient/40-50y)

    Many patients and healthcare professionals considered a personal approach as essential, for example: healthcare professionals should verify whether they have drawn correct conclusions from PROM results and patients’ explanations, and whether they understand patients’ needs.

    2.3 Trusting patient–professional relationship

    Patients and healthcare professionals described that the regular contact in dialysis care is a strong facilitator to feel connected and build a trusting relationship, which was considered a prerequisite to conduct adequate PROM result conversations:

    Depending on trust, you tell someone more or less. (Patient/70-80y)

    Some patients mentioned that the close relationship can also give rise to expectations regarding healthcare professionals’ engagement, which goes beyond nephrology care. Some patients and healthcare professionals mentioned that feeling connected can be a reason why patients sometimes prefer to talk about PROM results with their nephrologist or nurse rather than other healthcare professionals (eg, social worker or psychologist), while also acknowledging differences in expertise.

    2.4 Patient–professional collaboration

    Patients and healthcare professionals indicated that discussing PROM results provides most benefits when approached as a collaboration, in which patients and healthcare professionals contribute their own knowledge, experiences and ideas, and together consider what suits the patient best:

    We have an agreement that I will already think about the solution myself. Then I come to her and explain: ‘This is the complaint and I think this is the solution for this reason’. Then she says what she thinks the solution is. Then we discuss it and ultimately arrive at the best solution together. (Patient/30-40y)

    Many patients and healthcare professionals believed that this person-centred collaboration is now more adopted compared with the past. Some healthcare professionals explained that discussing PROM results takes some practice to become familiar with and integrate into consultations:

    In the beginning, it was a bit uncomfortable, because you get a lot of information and you don't know how to process and discuss it with the patient. (Nephrologist/30-40y)

    Patients and healthcare professionals indicated that clear, open and honest communication from both sides is very important, and considered it important to acknowledge and verify non-verbal communication. Many healthcare professionals and some patients mentioned that interpersonal differences, for example, in cultural or religious beliefs, can make discussing PROM results more challenging. It then takes more effort to understand each other and to articulate needs and suggestions:

    When the patient’s view is very different and it goes against my gut feeling. That are the most difficult conversations. (Nephrologist/40-50y)

    Some patients and healthcare professionals shared that consequently, certain topics may remain undiscussed, for example, sexual dysfunction in the presence of a family member.

    3. Theme 3: Follow-up on PROM results discussions

    Patients and healthcare professionals stated that discussing PROM results, including follow-up actions and evaluation, should be part of routine care and integrated into the multidisciplinary treatment process.

    3.1 Follow-up actions and evaluations embedded into treatment process

    Patients and healthcare professionals indicated that it does not stop after discussing PROM results: follow-up actions and continuous evaluation over time are part of this process:

    That she [nephrologist] asks at the next consultation ‘Has it improved sir?’…So that you do not get a feeling like 'the conversation is done, the results end up in a drawer and the person [patient’s perspective] does not matter'. (Patient/70-80y)

    Several healthcare professionals stated there is a need for guidance on how to act on PROM results: they now tend to focus on symptoms for which they know treatment exist and less on medically ‘non-treatable’ symptoms or HRQOL, because they like to have ‘something to offer’. Many patients indicated that they desire explanations and clarity about symptoms and their treatments, even when there are only few or no treatments available. Most patients and healthcare professionals described the influence of PROMs as ‘fine-tuning’ of treatment, since information and conversation about PROM results help to personalise treatment:

    With PROMs, you can support patients where they experience problems. We used to look at laboratory values and blood pressure, but sometimes patients do not benefit from that. But if we work on the limited energy, we also build on a better quality of life. (Nurse/50-60y)

    3.2 Multidisciplinary process

    Patients and healthcare professionals described follow-up actions on PROM results as a multidisciplinary process, guided by patients’ attending nephrologist and/or nurse practitioner—also called ‘the playmaker’ in this context. This healthcare professional consults with colleagues within (eg, during multidisciplinary meetings) and outside the care team, and refers patients for appropriate care:

    There may be things that require other healthcare professionals and then you refer […] to the general practitioner, other medical specialists and paramedics. (Nephrologist/50-60y)

    Patients and healthcare professionals considered referral an appropriate response to certain PROM results: patients should be able to discuss all topics with their attending nephrologist or nurse practitioner, but this healthcare professional is not expected to act on all PROM results.

    Part B: specific situations

    Patients’ and healthcare professionals’ perspectives on specific situations are described below, while highlighting themes (by means of the letter ‘T’) from part A that were most strongly reflected (see table 3 for illustrative quotations). For all situations, similar themes emerged as in part A. However, for sensitive topics, the roles of and interaction between patients and healthcare professionals slightly differed: compared with other topics, healthcare professionals were expected and advised to take more initiative and a leading role in conversations.

    View this table:
    Table 3

    Illustrative quotations of patients and healthcare professionals for specific situations in discussing PROM-results (part B)

    Situation 1: no changes or new topics

    Patients and healthcare professionals emphasised that when PROM results have not changed or revealed new topics, it should still be discussed (T1.5), to verify interpretation of PROM results (eg, because the patient’s situation or opinion may have changed (T1.4)) and whether the patient wants to further discuss it (T2). Many mentioned that, due to the frequent contact between patients and healthcare professionals (T2.3), topics may have been discussed already. They stated that, in most cases, it is then sufficient to only briefly discuss PROM results, simply to confirm the situation is stable, that the healthcare professional is aware of the PROM results and that everything can be discussed (T1.5, T2).

    Situation 2: sensitive topics

    Patients and healthcare professionals indicated that PROMs can serve as a tool, ‘a conversation starter’, to discuss sensitive topics such as sexual problems, depression and death, that probably remained undiscussed otherwise (T1.4–1.5). In contrast to less sensitive topics (compared with general topics from part A), both patients and healthcare professionals experienced and advised healthcare professionals to up the leading role and take the initiative (T2.2) to talk about sensitive topics, ‘because patients have already taken the first step by reporting their complaints’. Many stated that the conversation should be initiated by healthcare professionals as if it is any other topic, suggesting that ‘it is normal to talk about these topics’ (T1.5), but with additional care, for example: use open questions, so that patients can decide what and how much they want to share (T2.1). Healthcare professionals should acknowledge and verify non-verbal communication, and ask whether patients want to talk about it at all (T2), at that moment or later (to ensure a safe environment (T1.1) and feeling prepared (T1.2)), with this or another healthcare professional (feeling connected and trust are highly important (T2.3)), and with or without others present (eg, partner or interpreter) (T1.1, T2.4). Furthermore, all patients and healthcare professionals indicated that topics such as sexual problems, depression and death can be difficult to discuss for the patient. Although all patients recognised that such topics can be challenging for healthcare professionals as well, only few healthcare professionals confirmed this—most indicated that ‘no topic should be difficult for them’.

    Situation 3: no medical treatment

    Patients and healthcare professionals indicated that also outcomes for which there is no medical treatment available should be discussed, since patients experienced and reported these complaints. They described that healthcare professionals can also support patients on these topics by listening to them (T1.5) and referring them to other healthcare professionals for non-medical support (eg, regarding coping or lifestyle). Yet many healthcare professionals also described their discomfort when discussing symptoms for which they feel there is no solution. Most patients, however, indicated that they do not expect a solution for all symptoms, but do want explanation and clarity on potential causes, prognoses and options that may provide relief (eg, things they can do themselves and/or with support from other healthcare professionals (medical or paramedical)) (T3).

    Situation 4: factors not related to kidney disease or dialysis treatment

    All patients and healthcare professionals emphasised that everything can be discussed, whether or not it is directly related to CKD or dialysis treatment (eg, comorbidities or life events) (T1.5). The nephrologist or nurse is considered the initial person to discuss PROM results, as they are the patient’s first point of contact, who have a complete overview and understanding of the patient’s situation, and can refer to the proper healthcare professionals for additional support (T1.4, T2-3). Although most healthcare professionals acknowledge that everything can be discussed with them (T1.5), they also strongly felt the need to define their responsibilities and manage patients’ expectations towards them (T2–3). Many patients and healthcare professionals described that identifying potential causes and responsible (para)medical fields also helps patients to understand the symptoms and treatment options (T3).

    Discussion

    This qualitative study investigated patients’ and healthcare professionals’ experiences with and perspectives on optimal ways to discuss PROM results in routine dialysis care. Three overarching themes were identified describing the organisation and basic principles of discussing PROM results, the roles of and interaction between patients and healthcare professionals, and follow-up after PROM results discussions.

    The majority of existing literature is theoretical and focuses on potential benefits and mechanisms explaining why PROMs contribute to patient–professional communication.14 16 Our study adds to this literature by providing in-depth knowledge on how to discuss PROM results based on experiences and insights from routine nephrology care, resulting in practical guidance that is directly applicable to real-world practice. Our results showed similarities to the findings in the literature reviews of Greenhalgh et al and Schick-Makaroff et al, for example: PROMs help to start conversations through patients’ self-reflection, the confirmation that everything can be discussed or ‘permission to raise issues’, by providing a tool for discussion and articulation of experiences (eg, sensitive topics such as sexual problems and depressive symptoms) and needs, and by increasing healthcare professionals’ insight into and awareness of patient-relevant outcomes.14 16 Moreover, in line with and building on their findings,14 16 we found that a good patient–professional relationship is crucial for discussing personal concerns, needs and PROM results, and that the frequent contact in dialysis care was considered a strong facilitator in building this trusting relationship. In the Netherlands, it is common practice that patients have one primarily responsible nephrologist and nurse, and therefore, most patients already have established patient–professional relationships when discussing their PROM results. Our results suggest that this is a good foundation for getting the most out of discussing PROM results in routine dialysis care and potentially also in other chronic care settings.

    Notable in our research is the difference between what is pursued and experienced, when it comes to patient–professional interaction. Healthcare professionals in particular expressed they would like patients to have more control, while at the same time acknowledging they struggle with not being too dominant and directing in conversations. Although healthcare professionals expressed preference for a guiding role, no suggestions were made on what or how they could change their own approach in practice. The preferred patient–professional interaction aligns with the deliberative model as described by Emanuel and Emanuel.38 Although our findings and literature suggest that patients’ autonomy and values are increasingly given place in practice, further guidance may be needed to create a partnership as in the deliberative model.39 Currently, healthcare professionals may not be aware of or actively choose a communication style, and literature also shows that it may be challenging for healthcare professionals to change their usual approach despite new insights and awareness.14 We believe that recognition is the first step and change may require further guidance, training and practice.40 Though, our research already provides some suggestions to enhance patients’ initiative, for example: healthcare professionals could inform patients beforehand about the aim and relevance of PROMs, and about when and how they can share their experiences, concerns and questions about PROM results; this may encourage patients’ preparation, awareness that everything can be discussed and empower them to raise topics during consultations.

    Another remarkable finding is that healthcare professionals tend to prioritise topics for PROM discussions based on perceived ‘treatability of symptoms’, while at the same time emphasising that PROM results and all topics should always be discussed, irrespective of the situation (eg, whether or not there is a medical treatment available or it is CKD related), and that discussing PROM results in itself can already help. This underlines the importance of asking, articulating and verifying what is important to patients and what their needs are, and the central role (ie, the ‘playmaker’ role) assigned to the attending nephrologists and/or nurses in dialysis care (ie, discussing all topics and, if needed, referring to other (para)medical healthcare professionals when necessary); this role in nephrology may be broader than in other medical fields, for example: a study in oncological care found that discussions and further exploration based on PROM results were limited to cancer-related issues.41

    Most of the barriers identified in this study are in line with and add to literature on PROM implementation into routine care.21–25 However, our study shows a different nuance regarding time constraints, namely: using PROMs itself is not time consuming (some stated that it even saves time), but the fact that it reveals new topics that would otherwise remain unnoticed and undiscussed. This nuance does not discard that time management can be challenging, but it primarily confirms a major advantage of using and discussing PROMs namely that we gain a more complete, person-centred overview of how patients are really doing. Moreover, we expect time challenges to diminish over time: it will most likely take less time once patients and healthcare professionals have become familiar with discussing PROM results,12 and topics will be discussed gradually over the CKD trajectory, resulting in less topics to discuss compared with the first PROM discussion.42

    Our findings confirm that using PROMs can facilitate person-centred care,14–17 43 and form the foundation for training healthcare professionals in discussing PROM results. See also box 1 for a brief overview of the practical guidelines and considerations. These practical guidelines can be used to develop novel or adapt existing training tools (eg, the PROmunication tool developed in cancer care by Skovlund et al15) for the nephrology care setting. Training healthcare professionals in how to use and discuss PROM results can improve shared decision making, since both the information obtained with PROMs and a good patient–professional communication, enhance this process.44

    Box 1

    Brief overview of practical guidelines and considerations for optimal discussion about patient-reported outcome measure (PROM) results between patients and healthcare professionals.

    1. Organisation and basic principles of discussing PROM results

    1.1 Suitable setting for discussing PROM results

    • Invite patients to complete PROMs 2–6 weeks in advance.

    • Inform patients that, how and why the PROM results will be discussed.

    • Discuss PROM results face to ace, in a safe and private setting, for example, during annual consultations (once per year is sufficient).

    1.2 Preparations by patients and healthcare professionals

    • both prepare the discussion about PROM results: think beforehand about what to discuss, if and what support is needed, and which options exist.

    1.3 Dealing with time constraints

    • PROMs provide additional information on how the patient is really doing. As a patient and healthcare professional: together prioritise and discuss the 3–4 most important topics.

    1.4 PROMs as tool for personalised holistic consultations

    • Use PROMs as a tool that provides guidance on what is important to the patient.

    • Use PROM results as a ‘conversation-starter’ to discuss topics that otherwise remain undiscussed (eg, sensitive topics such as sexuality).

    • Use PROMs to gain insight and overview through patients’ self-reflection, comparative information and a more complete picture.

    1.5 Always discuss PROM results

    • Discussing PROM results is an essential part of using PROMs in routine care.

    • Discuss PROM results to make clear that any topic can be discussed and to create an opportunity to start a conversation about these topics.

    • Discuss PROM results as discussing itself also helps patients to inform or to feel seen, heard and understood by their healthcare professional.

    2. Roles of and interaction between patients and healthcare professionals

    2.1 Patient’s role: active participant

    • As a patient: take the initiative and articulate your experiences and needs.

    • As a healthcare professional: realise that patients often wait for their healthcare professional’s initiative and, if so, explicitly provide them the space to share experiences and needs.

    2.2 Healthcare professional’s role: guide

    • As a healthcare professional: take up a guiding role and provide structure in the conversation; ask patients to expand on their experiences and needs, help to prioritise topics and actions, and verify your interpretation and conclusions.

    2.3 Trusting patient–professional relationship

    • The nephrologist and/or nurse who knows the patient well should conduct the conversation; feeling connected and a trusting relationship is a prerequisite to discuss PROM results and to share personal concerns, experiences and needs.

    2.4 Patient–professional collaboration

    • Both contribute your own knowledge, experiences and ideas, and together consider what suits the patient best.

    • Interpersonal differences can be a barrier; take the time and effort to understand each other and articulate needs and suggestions.

    3. Follow-up on PROM results discussions

    3.1 Follow-up actions and evaluations embedded into treatment process

    • Follow-up actions and evaluations are part of the process of discussing PROM results.

    • As a healthcare professional: provide patients with explanation and clarity about their symptoms and treatment options; patients do not expect a solution for all symptoms.

    • Take PROM follow-up actions for fine-tuning of treatment; information and conversation about PROM results help to personalise treatment.

    3.2 Multidisciplinary process

    • Incorporate PROM follow-up actions into the multidisciplinary process, guided by the nephrologist or nurse practitioner.

    • Discuss all topics, regardless of the situation (eg, when no medical treatment is available or experiences are not directly related to chronic kidney disease) and refer to other (para)medical healthcare professionals when needed and desired by patients; referral is an appropriate response to PROM results.

    Further research is needed to investigate whether and how discussing PROM results can improve actual patients’ outcomes (eg, HRQOL).45 Moreover, healthcare professionals expressed the desire for guidance on actions that can be taken in response to PROM results. Literature also suggests that healthcare professionals are not always aware of all available treatment options to improve symptom burden,11 24 hereby underlining the need for further research on and development of a guide to improve symptom management and HRQOL.46

    Our study elucidates in-depth knowledge of patients’ and healthcare professionals’ experiences with and perspectives on optimal ways to discuss PROM results in routine dialysis care. Participants had experience with completing and discussing PROM results, resulting in knowledge that is directly applicable to real-world practice. We achieved saturation and demonstrated robustness of our results by exploring specific situations in addition to the general dialysis context. Limitations include that, despite efforts to achieve heterogeneous samples, our results are shaped by people who are willing to participate in interviews, which may limit the transferability of the findings to the total population. For example, participants may have a more positive attitude towards research, healthcare and PROMs. Patients and healthcare professionals who are struggling with or who experienced little benefit from using PROMs, may not have felt addressed, motivated or comfortable enough to participate in the interviews. Though, our participants also shared critical notes, explained that discussing PROM results took practice, and provided examples of patients and healthcare professionals who believe or behave otherwise. Moreover, all participants were Dutch and hence, topics such as cultural differences and language barriers were primarily uncovered via secondhand information (eg, healthcare professionals’ perspectives). Finally, we should be aware that our own experiences and preconceptions may have coloured our results (ie, research reflexivity),32 even though multiple researchers with different backgrounds have performed interviews and interpreted data.

    In conclusion, this study provides in-depth knowledge into patients’ and healthcare professionals’ experiences with and perspectives on the organisation of, the roles of and interactions between patients and healthcare professionals in, and follow-up on PROM results discussions. Our findings form the foundation for training of healthcare professionals regarding optimal ways to discuss PROM results in routine dialysis care. Further research is needed to provide guidance on follow-up actions in response to PROM results to ultimately improve patients’ outcomes.

    Data availability statement

    Data are available on reasonable request. Contact information: Friedo W Dekker (F.W.Dekker@lumc.nl).

    Ethics statements

    Patient consent for publication

    Ethics approval

    This study involves human participants and was approved by Medical Research Ethics Committee (METC-LDD), reference number: N20.097 Participants gave informed consent to participate in the study before taking part.

    Acknowledgments

    The authors are grateful to all the patients, healthcare professionals and dialysis centres that participated in the interviews and contributed to the participant recruitment and development of the interview protocol.

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    Supplementary materials

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    Footnotes

    • Contributors EMvdW, JM, JAJB, FWD and YM designed the study. EMvdW and JM performed the interviews, and transcribed and coded the data. EMvdW, JM and YM conducted the data analysis and drafted the manuscript. FWD and YM provided supervision and mentorship. All authors (EMvdW, JM, JAJB, WJWB, FJvI, MAGJtD, MHH, FWD and YM) assisted in the interpretation of results, provided important intellectual content and revised the manuscript. All authors provided final approval of the version to be published. EMvdW accepts full responsibility for the finished work and/or the conduct of the study, had access to the data, and controlled the decision to publish.

    • Funding The development and implementation of the Dutch registry of PROMs (RENINE/PROMs registry) was supported by unrestricted grants from the Dutch Kidney Foundation (A1D1P04), the Netherlands Patients Federation (N/A) and Dutch Health Insurers Association (N/A). JM is supported by a grant from the Dutch Kidney Foundation (20OK016). YM is supported by a grant from the Dutch Kidney Foundation (21OM+002). WJB has received grant support from Zilveren Kruis (N/A).

    • Competing interests None declared.

    • Patient and public involvement Patients and/or the public were involved in the design, or conduct, or reporting, or dissemination plans of this research. Refer to the Methods section for further details.

    • Provenance and peer review Not commissioned; externally peer reviewed.

    • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.