Results

Overview of themes

The inductive-deductive thematic analysis resulted in six themes, each representing a stage in PROMs implementation (see Fig. 2 for a visual overview). While the interview guide was inspired by the sequential, communication-oriented framework [19], participants expanded, refined, and re-specified these stages based on their experiences, resulting in an empirical elaboration of the original framework depicted in Fig. 1. Below, the six themes are discussed, with detailed results per theme in Table 1.

Fig. 2: Illustration of the sequential process of PROMs implementation formed by the themes

Theme 1: selecting and organizing PROMs use

The first theme captures a preparatory phase that precedes patient involvement. This theme was only mentioned by the professional participants, while patients generally were not aware of this stage. Professionals described this as foundational for making the following steps possible. They highlighted that selecting appropriate PROMs instruments and embedding them into clear clinical workflows requires efforts at the organizational level, yet this process is often fragmented and inconsistent.

Professionals describe the selection of PROMs (subtheme 1.1) as a decision shaped by local preference, previous research, or regional and national discussions. This led to significant variation between institutions and disease areas. For clinicians, this variation and lack of consensus created confusion about which questionnaires should be used and when, as well as extra burden to find agreement. A subtle difference regrading PROMs selection emerged across professional roles: the policy advisor described a deliberate process of consulting validated instruments and national data dictionaries: “We do a search with our hospital-wide quality department on what kind of questionnaires are used for this tumor group” (P6), while clinicians generally described PROMs as given tools: “There are three questionnaires we can use or we have to use” (P1), without much engagement in the selection process.

Task division (subtheme 1.2) emerged as another challenge. PROMs-related responsibilities, such as sending invitation, monitoring completions, and checking alerts, were distributed across nurses, data specialists, and clinicians. However, role division is different between institutions, and many patients move across hospitals during their treatment. These institutional differences are not always aligned, which complicated communication and coordination. As one clinician illustrated, “In oncology,_ about 60% patients are surgically treated in a different hospital and then come back (to us) for follow up. The care processes are really_,_ really complicated.”_ (P2).

Theme | Subtheme | Example quote
1. Selecting & organizing PROMs use | 1.1 Choosing & aligning PROMs | “We do struggle sometimes … the number of questions we ask,whether we have to use validated questionnaire,or whether we should only focus on the data we think we need … it’s a constant discussion” (P6, policy advisor)
1.2 Task division & coordination | “If they’ve had all their treatment with curative intent in Eindhoven (and not with us),you have no clue how they’re doing,what type of person they are,and that’s really important information when you start your second line treatment.” (P2, clinician)
2. Establishing purpose & motivation | 2.1 Clarity of PROMs purpose | “We’re a little pushed because of the quality indicator. We have to arrange it (PROMs).” (P1, clinician)“And only afterward I thought,why did I fill all that in.” (P9, patient)“(They are) not really for yourself,more that the healthcare provider can use them.” (P17, patient)
2.2 Motivation & perceived benefit | “It becomes an administrative burden,because it comes with an extra consultation between the nurse with the patients.” (P2, clinician)“It’s always a balance between what’s extra work and what’s extra gain.” (P5, clinician)“I do think they (PROMs) are important to complete. With the other ones (questionnaires) I fill out,I always get feedback showing roughly where I stand.” (P11, patient)“I didn’t find it important (if no feedback is given)” (P10, patient)
3. Experiencing PROMs as a task | 3.1 Ease of completion & support | “I think many patients can complete the questionnaires,but we have an exceptionally well-educated population.” (P4, implementation staff)“Most of the time they don’t have very high education or they don’t have education at all.” (P1, clinician)“The Dutch (language) used in the app is sometimes quite complex.” (P9, patient)“I’ve worked with people with intellectual disabilities … they don’t say ‘I don’t get it’,they come up with excuses. Then care providers might think they are not cooperating,but that’s not the case.” (P9, patient)
3.2 Emotional impact | “Lately it’s also been mentally quite tough to go through all this stuff (questions) again and again.” (P11, patient)“I also have moments where I think ‘no,I’m not doing this (PROMs) now,it’s not going well now’”. (P12, patient)
3.3 Personal relevance & contextual fit | “What I consider a livable life might be totally different for someone else.” (P16, patient)“If (questions) come from the prostate cancer foundation,those should be general questions to paint a general picture. (Those) from the hospital should be very specific to my life and my situation.” (P13, patient)
4. Making sense of results together | 4.1 Lack of use & feedback | “We do know that we collect a lot of data which we don’t use.” (P6, policy advisor)“We don’t check if they (patients) fill it in. We’re not very pushy.” (P1, clinician)“I have no idea whether they see the results of those questionnaires. I haven’t received feedback on them.” (P13, patient)
4.2 Dialogue & reflection | “I can see in the dashboard what is going well and not so well,and this is really helpful in opening the conversation.” (P3, clinician)“There are specific questions where I think ‘hey,maybe I can do something with that’.” (P11, patient)
5. Applying PROMs information in care | 5.1 Integration into person-centered clinical practice | “It’s not so much integrated yet for the healthcare professionals.” (P4, implementation staff)“It takes a lot of work to navigate (the system) through the patient’s file to have the data you want.” (P7, clinician)“The other thing would be if you have a very red kind of answer,the ward is being warned,and people start calling the patient.” (P5, clinician)
5.2 Relational value | “If someone lost her husband three months ago,that’s more important than the routine gynae care consultation.” (P2, clinician)“I think there is a personal contact with the nurse … she can ask,based on the questionnaire,‘I see this,was it very unpleasant?’” (P15, patient)
6. Evaluating & improving PROMs implementation | 6.1 Patient empowerment | “We could educate our patients more about what they could do to improve their health … they don’t recognize they have a role in this.” (P4, implementation staff)
6.2 Organizational learning & shared improvement | “The purpose is to use these data for nationwide analysis … and see whether there are differences or where there can be improvement.” (P7, clinician)

Theme 2: establishing purpose and motivation

This theme captures the step of inviting patients to complete PROMs, corresponding to Step 1 in the theoretical framework as shown in Fig. 1. This is the first step in the data-collection process and a key moment deciding what information becomes available for care. Both professionals and patients emphasized that engaging with PROMs requires understanding why they are being completed and for whom, yet these purposes were not always clearly communicated or understood.

Professionals differed in how they described the purpose of PROMs (subtheme 2.1). Implementation and policy professionals articulated an institutional vision, including an explicit commitment to discussing PROMs results with patients and using data for quality improvement (P6). Clinicians also recognized PROMs’ clinical potential, but more often described the initial driver for adoption as external: “We’re a little bit pushed because of the quality indicator” (P1). PROMs invitations were often automated within digital systems, and clinicians did not always have the time or opportunity to introduce their purpose personally to patients, which made PROMs seem like administrative obligations.

Patients reported similar experiences regarding unclear purpose. They mentioned that the purpose of PROMs was rarely explained to them, and they spontaneously formed a range of own interpretations. These perceived purposes were diverse and ranged from research, quality improvement, to more clinical purposes such as medication monitoring, treatment guidance, and informing their physician. These interpretations often reflected what patients hoped PROMs would do, even if such uses did not always occur in practice.

Motivation to complete and use PROMs strongly depended on perceived benefits (subtheme 2.2). Patients mentioned that personal explanation from clinicians can increase willingness to engage, and PROMs felt worthwhile only when responses were followed by feedback or used in consultations. This anticipation of feedback as a motivational driver is distinct from the actual feedback practices described in Theme 4, though the two are closely connected: when feedback is absent in practice, it feeds back into patients’ motivation, reducing their willingness to complete PROMs in the first place. Altruism - wanting to use own data to help future patients - also encouraged completion. However, when PROMs did not lead to follow-up, patients questioned their relevance and became less engaged. As one patient put it, “If something is really done with it,_ of course it’s important. But like I said… I never believe anything is actually done with them.”_ (P14) Clinicians’ motivation was impacted by the tension between perceived benefit and experienced burden. When the added value of PROMs comes with extra workload, motivation is difficult to sustain: “It’s always a balance of what’s extra work and what’s extra gain” (P5).

Theme 3: experiencing PROMs as a task

The third theme reflects the practical and emotional experience of completing PROMs, corresponding to Step 2 in the theoretical framework. While professionals recognized that PROMs should be accessible and easy to complete, patients provided detailed experiences of usability challenges, emotional burden, and mismatches between standard questionnaires and the realities of individual trajectory with cancer.

Professionals identified multiple factors regarding ease of completion and support (subtheme 3.1), such as digital literacy and language proficiency. They also described systemic barriers, such as fragmented digital platforms and insufficient integration with electronic health record systems. These structural issues often created additional work for both clinicians and patients. Patients similarly reported difficulties, including complex interfaces, multiple logins, and long questionnaires, which made completion burdensome at times.

Besides these practical barriers, patients also experience PROMs on an emotional level (subtheme 3.2). PROMs sometimes elicit reflections and a sense of being cared for, but also risk adding burden and fatigue, particularly when detailed symptom questions were asked repeatedly during periods of distress. As one patient noted, “Because I am at the very end of the disease,_ questions about death are quite heavy.”_ (P13).

Another factor emphasized by patients is the personal relevance and contextual fit of the questions (subtheme 3.3). Some standard questions did not apply to their situations, and this caused extra burden and hindered engagement. This observation was also echoed by clinicians, such that PROM questions should be adapted to individual patient situation: “If I’m saying in my PROMs that I have troubles climbing the stairs,_ don’t ask me whether I can ride my bike.”_ (P2).

Theme 4: making sense of results together

The next stage concerns how PROMs results are interpreted and shared, related to but expanding Step 3 in the theoretical framework. Across interviews, both groups described a weak or inconsistent feedback loop (subtheme 4.1), where results were collected but not always discussed. Clinicians acknowledged that they did not always act upon PROMs data, often due to limited time and prioritizing other clinical results. Patients reported similar experiences from their side: many said that they rarely received feedback and were unsure whether clinicians had seen or used their responses, which made them question the value of completing PROMs. As one patient remarked, “Then I arrived at the appointment,_ and the doctor hadn’t read them_,_ or hadn’t even received them. Then I think ‘garbage in_,_ garbage out’, right? If no one reads it_,_ there’s not much point._” (P11).

Professionals noted several reasons for such lack of feedback. Clinicians often attributed such inconsistent follow-up to inadequate tool support. PROMs results were usually presented as raw individual data, leaving clinicians having to interpret the data themselves, something they had little time for during brief consultations. As a result, they tended to focus on clinical indicators that were more meaningful. This lack of supportive tooling was linked to limited ICT involvement, such as the absence of automated analysis or graphical summaries, which clinicians associated with low institutional prioritization of PROMs. “It would be the ideal situation that those tables would help us in selecting what patient needs or not … but we’re not using it yet due to our lack of innovation power. ” (P5).

Despite these challenges, both patients and professionals acknowledged the importance of providing feedback (subtheme 4.2). Patients described feedback as an encouragement for self-reflection and a source of relational care, such that they felt “seen” when clinicians discussed their PROMs responses. Healthcare professionals recognized that discussing PROMs results improves patient response rates and enriches conversations by bringing up topics that might be overlooked by only clinical examinations.

Theme 5: applying PROMs information in care

This theme reflects the translation of PROMs information into clinical practice, related to Step 4 in the theoretical framework. Clinicians described PROMs as potentially useful for triage, monitoring symptoms, support self-management, and initiating referrals (subtheme 5.1). However, this integration varied widely. In ideal cases, PROMs prompt clinicians to address issues beyond clinical indicators, creating opportunities for tailored care. But more commonly, professionals reported that PROMs data ran parallel to clinical workflows rather than being embedded within them. As one implementation staff observed, “healthcare professionals are a bit reluctant to use the PROMs information during consultations with patients.” (P4). Patients often expressed desires for actionable follow-up based on their PROMs results: personalized suggestions, credible information source, or self-management strategies are valued outside of the consultation room.

Besides the clinical usefulness, both groups emphasized the importance of human contact beyond simple data (subtheme 5.2). Patients described PROMs as helpful prompts for conversation but not substitutes for personal interactions. As one patient noted, “I sometimes miss that personal touch in the whole process. I find that difficult.” (P15) This relational dimension is also highlighted by the clinicians: “It’s nice for the person that’s in contact with me for years that I also contribute to caring for her.” (P2).

Theme 6: evaluating and improving PROMs implementation

The final theme captures how participants reflected on the broader value of PROMs beyond individual encounters, going one step further than the scope of the theoretical framework. Clinicians highlighted the potential of PROMs to empower patients (subtheme 6.1), particularly when reflecting on their responses helped patients recognize symptoms or articulate needs more clearly. As one clinician explained, “The other purpose is to give the patients the opportunity to think about how it’s going,_ how they feel when they’re not in the hospital_,_ so they have the time to think about their complaints while filling in the questionnaire.”_ (P1) Patients agreed and emphasized that empowerment also depends on how PROMs are designed. They expressed wishes for clearer visualizations, more intuitive interfaces, and results presented in ways that felt meaningful to them. One patient suggested that professionals should pre-test questionnaires to understand the burden and relevance. Together, these comments pointed toward co-design as an important way to more engaging implementation.

Beyond individual empowerment, clinicians emphasized the value of PROMs for organizational learning (subtheme 6.2), particularly through benchmarking within and across institutions. These comparisons help identify where patients stand relative to others and where one institution’s approach may differ from others. Such aggregated insights could, in turn, support the initial stages of PROMs implementation by helping institutions move toward shared standards and understandings of what should be measured, as noted in Theme 1. More broadly, the wishes expressed across themes, including better digital tools (Theme 4) and clearer purpose communication (Theme 2), reflect how evaluation at this final stage feeds back into earlier stages of the implementation process.