Discussion

This study examined the implementation of PROMs in oncology care in the Netherlands through a communication-centered, sequential lens. While previous research has documented several logistic barriers such as time pressure and inadequate IT infrastructure [15, 30], our findings extend the literature by showing where in the implementation process the challenges and opportunities emerge, and how they accumulate across interrelated stages. By empirically mapping challenges onto theoretically informed stages [19], this study helps explain why PROMs sometimes fail to achieve their intended value and highlights how improved communication across stages may enhance patients’ understanding and self-management while supporting healthcare professionals deliver more responsive, person-centered care. Our findings both support and extend the de Ligt et al. framework. Themes 2 through 5 correspond to the framework’s four steps, providing empirical validation for its conceptual structure. Themes 1 and 6 emerged inductively: Theme 1 captures a preparatory organizational stage preceding the framework’s scope, and Theme 6 captures an evaluative stage beyond it.

Examining how this process unfolds, our findings indicate that challenges often originate in early stages, only to become prevalent at later points. In particular, stages that are largely invisible to patients, such as selecting PROMs (theme 1) or evaluating implementation outcomes (theme 6), influence later, more visible stages in which engagement from patients and professionals is expected. For instance, when PROMs selection and task division are fragmented, clinicians have limited opportunities to tailor and introduce PROMs to patients (theme 2), resulting in weaker motivation and engagement (theme 3), and ultimately reduce sense-making and meaningful use of PROMs in care (theme 4 and 5). Conversely, challenges at later stages, such as unmet feedback expectations, also feed back into earlier ones, affecting clinicians’ motivation and organizational decisions, suggesting the process is cyclical rather than strictly linear (see also Fig. 2).

By integrating perspectives from professionals and patients, this study provided additional insights by highlighting experiences that are shared rather than reported from a single group perspective. Across groups, participants recognized the potential of PROMs to raise concerns beyond clinical indicators and to support more person-centered conversations, positioning PROMs not only as a measurement tool [1], but also as instruments facilitating communication between patients and clinicians. At the same time, participants commonly expressed frustration when PROMs were collected but not used, consistent with previous research showing that PROMs are often under-integrated into clinical encounters [31, 32].

Additionally, participants differed in how they interpreted this lack of use. Patients mainly interpreted the absence of feedback as a lack of recognition of their input, which reduced their motivation to engage with PROMs. However, clinicians emphasized that PROMs data are valuable but underused due to systemic barriers, as documented in implementation research [15, 30]. This contradiction highlights the bidirectional, reciprocal potential of PROMs as a communication tool [33]: limited clinical use influences patient perceptions of value, which in turn constrains the completing and therefore application of PROMs in communication and care. More broadly, this echoes the doctor–patient communication literature, which frames communication as a reciprocal process shaped by feedback and shared meaning [34, 35].

Although our primary aim was to identify where challenges occur, the interviews also revealed what worked well in current practices and where opportunities are for improvement. In line with previous research [36, 37], patients described PROMs as moments of self-reflection, and clinicians noted their value in revealing concerns that may otherwise remain unaddressed. Both groups emphasized the emotional and interpersonal aspect of PROMs use, noting that questions should be personally relevant and human interaction is essential for PROMs to feel meaningful. Future research should also explore how patients cope with emotionally challenging moments during PROMs completion, and how clinicians address these emotional aspects when interpreting or discussing PROMs results in clinical encounters. The findings also pointed to the empowering potential of PROMs, as patients suggested concrete improvements such as pre-testing questionnaires and designing more user-friendly interfaces. Taken together, these insights resonate with broader discussions on patient involvement and co-design as ways to enhance the communication quality of PROMs across stages [38].

These insights suggest several practical implications. At the preparatory stage, organizational effort is needed to ensure consistent PROMs selection and clearer division of responsibilities. During the invitation stage, brief personalized explanations or introduction to PROMs can help strengthen patient motivation and clarify expectations [39]. At later stages, co-designing the questionnaire content and interface during the preparatory phase could address issues of usability, burden, and relevance, echoing calls for participatory design in PROMs development [38, 40]. Clinicians would benefit from supportive tools, such as AI-assisted summaries or graphical overviews [19, 41]. Together, these implications highlight that effective PROMs implementation requires coordinated effort across all stages of the communicative process, from organizational preparation to continued evaluation.

A key strength of this study is the use of a communication-centered framework, which allowed challenges to be examined as sequential and interdependent, rather than as isolated barriers. Moreover, the multi-perspective design involving patients, clinicians, and implementation staffs enabled examination of how communicative intentions and experiences diverge across roles and stages. Several limitations should be noted. The study was conducted in the Dutch oncology context, involving professionals from multiple healthcare organizations and patients from six different provinces, providing reasonable diversity but still limiting transferability to other healthcare systems. Differences between hospitals and care pathways may impact participants’ experiences in ways that were not fully revealed in interview data, and future research could examine how organizational context influences specific stages more directly. In addition, interviews capture reported experiences rather than real-time PROMs use. Future studies could combine observational methods with targeted interventions at specific stages, such as redesigned invitations, to examine how strengthening one stage influences the rest of the implementation sequence.