(Electronic) patient reported outcomes: an undervalued tool for discussions on palliative care?

Palliative care is defined by the World Health Organization as an approach that improves the quality of life (QoL) of patients and families facing life-threatening illness through the prevention and relief of suffering by early identification, impeccable assessment, and treatment of pain and other physical, psychosocial, and spiritual problems (1). This definition emphasizes that palliative care is holistic, patient-centered, and applicable throughout the disease trajectory, alongside disease-directed therapies. Estimates suggest that approximately 75% of people approaching the end-of-life may benefit from palliative care. The growing numbers of older people and increasing prevalence of chronic illness in many countries mean that more and more people may benefit from palliative care (2).

Despite widespread acceptance of the definition of palliative care and understanding of its value in principle as well as its growing need, health systems continue to struggle with timely initiation of palliative care and with meaningful discussions about goals of care, best supportive care, and the discontinuation of burdensome treatments. Discussing palliative care remains inherently challenging for clinicians, patients, and families. Conversations framed explicitly around “palliative care” can evoke perceptions of abandoning curative intent, confronting mortality prematurely, or signaling therapeutic failure (3-5). These perceptions persist despite repeated efforts to redefine palliative care as compatible with active treatment and focused on QoL. As a result, clinicians may delay or avoid palliative care discussions due to fear of diminishing hope, prognostic uncertainty, or concern about causing distress, even when symptom burden and supportive needs are substantial (4).

In response to these barriers, clinicians may adopt the terminology of “supportive care” to initiate dialogue earlier in the disease trajectory. The term “supportive care” is frequently perceived as more acceptable by both healthcare professionals and patients, facilitating engagement with services that address many of the same domains as palliative care (3,5-7). While supportive care is often viewed as treatment-adjunctive support and palliative care as holistic and end-of-life oriented, this distinction is becoming more and more artificial. Supportive care, particularly in oncology, has traditionally focused on the prevention and management of adverse effects of disease and treatment, including symptom control, psychosocial support, nutritional care, and management of treatment-related toxicities, often with the explicit aim of enabling patients to tolerate and benefit from disease-directed therapy (8). However, both supportive and palliative care approaches share a commitment to symptom relief and holistic care, however, palliative care (typically) emphasizes longitudinal goal setting, advance care planning, and alignment of treatment decisions with patient values (9-12).

Another, significant and persistent barrier to meaningful supportive and palliative care discussions is the difficulty clinicians face in obtaining a clear, continuous, and holistic understanding of how patients experience their illness and how it as well as it is treatment affects their daily lives over time. Modern medicine is characterized by technological sophistication and data abundance, yet much of what matters most to patients, symptom burden, functional capacity, emotional distress, social participation, and existential concerns, remains imperfectly captured in routine care (13,14). Clinicians often rely on performance status scales, brief consultations, and intermittent symptom enquiry, all of which are subject to recall bias, time constraints, and systematic underestimation of symptom severity (13). A robust body of literature across oncology, cardiology, respiratory medicine, nephrology, and neurology demonstrates that clinicians consistently underestimate both the prevalence and intensity of symptoms such as pain, fatigue, dyspnea, anxiety, and depression (15,16). This gap between patient experience and clinician perception has profound implications. Decisions about continuing, escalating, or discontinuing treatment are frequently driven by disease-centered indicators such as tumor response, laboratory values, or physiological parameters, while the cumulative burden of illness and treatment on daily life may be insufficiently weighted. Because palliative care discussions depend fundamentally on recognizing suffering and impaired QoL, failure to recognize patients’ burden will result in these conversations being delayed or framed too narrowly around prognosis rather than patient-reported needs and holistic support.

Tools that systematically surface what matters most to patients remain underutilized as catalysts for timely and meaningful discussions about supportive and palliative care. Patient reported outcome measures (PROMs) offer a means of re-centering clinical conversations on patient experience by systematically capturing outcomes that could otherwise easily be overlooked or undervalued in routine care (17,18). PROMs are instruments, typically self-administered questionnaires, used to measure patient reported outcomes, such as functional status, health related QoL, symptoms and symptom burden, personal experience of care, and health-related behaviors such as anxiety and depression. These tools are considered reliable, particularly for concepts best known to the patient or inherently subjective in nature (19-21). By systematically capturing the patient perspective, PROMs can help address the often-poor concordance between clinician and patient reports of symptoms and side effects. Furthermore, PROMs may increase clinician awareness of psychological, social, and spiritual issues, broadening the focus beyond purely physical concerns during consultations (14-16,22).

Beyond their measurement function, PROMs and electronic PROMs (ePROMs) may serve as powerful conversation starters that facilitate earlier and more meaningful discussions about supportive and palliative care (23-25). By externalizing symptom burden and distress into a shared data source, PROMs can legitimize sensitive topics that patients may struggle to raise spontaneously and clinicians may hesitate to introduce. Worsening scores or concerning trends provide a neutral, patient-generated entry point for exploring how illness and treatment are affecting daily life, priorities, and values. Rather than framing discussions around prognosis or treatment failure, clinicians can anchor conversations in the patient’s own reported experience—for example, by noting persistent fatigue, declining function, or increasing emotional distress. In this way, PROMs shift the focus from “when to stop treatment” to “how the patient is coping” and “what matters most now”, reframing palliative care discussions as responsive, needs-based, and grounded in the patient’s lived experience.

PROMs have been shown to be acceptable to patients, particularly in the context of (advanced) cancer, where their use has been associated with improved clinical effectiveness, treatment adherence, quality of care, and even survival rates (21,26,27).

Recognizing the unique challenges of advanced disease, researchers have developed palliative-specific instruments designed to be less burdensome and more sensitive to patient experience. The development of palliative-specific instruments, such as the EORTC QLQ-C15-PAL (European Organisation for Research and Treatment of Cancer Quality of Life -C15 Palliative), was grounded in the recognition that standard QoL measures could be too burdensome or insufficiently sensitive for patients with advanced disease (28,29). While most PROM research to date has focused on cancer populations, yet symptom burden in palliative populations is not disease-specific. Comparative analyses of patient-reported symptoms across cancer, heart failure, chronic lung disease, and renal failure reveal strikingly similar symptom profiles and levels of distress (30). These findings challenge the persistent cancer-centric framing of palliative care and support a needs-based rather than prognosis-based approach to care integration. The transition from paper-based PROMs to ePROMs has greatly expanded their potential clinical impact. Unlike static questionnaires, electronic systems allow repeated assessments, longitudinal tracking, automated alerts, and integration with electronic health records, transforming PROMs into dynamic clinical tools that can actively inform care (22,31,32). Therefore, PROMs provide a scalable mechanism to operationalize patient-centered care across diverse diagnostic groups and care settings. Moreover, systematic use of PROMs could inform resource allocation, service planning, and health policy, ensuring that palliative care services respond to patient-reported priorities rather than being constrained by disease labels. By capturing the multidimensional experience of patients, PROMs have the potential to enhance equity, personalize care, and improve outcomes across populations.

However, despite their documented benefits, PROMs and ePROMs remain inconsistently implemented in real-world practice (33). Despite demonstrated improvements in patient-clinician communication, patient and clinician satisfaction, detection of unmet needs, monitoring of disease trajectory and treatment effects, identification of prognostic markers, cost-effectiveness assessment, and the provision of comfort and support for both patients and caregivers, hesitation regarding their widespread adoption persists (34-36). Barriers include technological limitations, lack of interoperability with electronic health records, concerns about data overload, limited clinician training, uncertainty about how to act on PROM data and improper integration of PROMs in routine clinical practice (33,37-41). There is also a risk of exacerbating inequities if digital systems are inaccessible to older patients, those with cognitive impairment, or individuals with limited health literacy (42,43). Additionally, these vulnerable groups are often disproportionately affected by reporting burden, which may further compound existing inequities. Addressing these challenges is essential to fully realize the potential of PROMs to improve patient-centered care, particularly in palliative and supportive care settings (44). One promising line of research aims to alleviate reporting burden and accessibility barriers by complementing, and in some instances partially replacing, active ePROM collection with passive sensor-based data acquisition. Early exploratory studies integrating sensor-derived metrics with ePROM data suggest that wearable technologies are both feasible and perceived as valuable by patients, including in palliative care contexts (45-48). Such hybrid approaches may provide a pathway toward more inclusive, less burdensome, and context-sensitive strategies for symptom monitoring and supportive care delivery.

When implemented longitudinally, (e)PROMs can function as practical decision-support tools, alerting clinicians to deteriorating symptom trajectories, functional decline, or psychosocial distress that may otherwise be underestimated during brief clinical encounters (49,50). Empirically derived benchmarks, such as a ≥10-point change on EORTC QLQ scales to indicate clinically meaningful deterioration or Edmonton Symptom Assessment Scale (ESAS) scores ≥4 (moderate) and ≥7 (severe) to signal significant symptom burden, can provide pragmatic criteria for structured clinical review (51-54). In electronic systems, predefined cut-offs or rapid worsening can trigger automated alerts, prompting timely symptom optimization, multidisciplinary review, and, where appropriate, earlier integration of palliative care or goals-of-care discussions (36,50,55). Used in this way, thresholds do not replace relational care or clinical judgment; rather, they support a transparent and reproducible mechanism to embed early, needs-based palliative care within routine practice.

Crucially, the clinical value of PROMs lies not in measurement alone, but in their interpretation and use within clear clinical pathways. Concerning scores or worsening trends should prompt timely review, multidisciplinary discussion, optimization of symptom management, and, where appropriate, structured conversations about goals of care and referral to palliative care services. Without such pathways, PROM collection risks becoming a passive documentation exercise rather than an active component of high-quality clinical care. At the service level, aggregated PROM data can inform quality improvement by identifying systematic gaps in symptom management, delays in supportive care referral, and inequities in patient experience. In this way, (e)PROMs align closely with contemporary clinical quality frameworks that emphasize patient-centered outcomes alongside traditional biomedical indicators. Importantly, the presence of PROM data should never be a prerequisite for palliative care discussions. The ethical and clinical obligation to address suffering exists independently of formal measurement. Over-reliance on thresholds or scores risks deferring conversations until deterioration is advanced, undermining the principles of early and integrated palliative care. Palliative care remains fundamentally relational; trust, listening, and continuity cannot be replaced by instruments.

If palliative care is to fulfil the promise articulated in the World Health Organization (WHO) definition, health systems must move beyond episodic, referral-based models toward earlier, needs-based integration embedded within routine clinical practice. (e)PROMs will not achieve this transformation in isolation, but when implemented with clear clinical pathways, adequate training, and accountability for response, they can support more timely, consistent, and clinically meaningful palliative care discussions. In this sense, (e)PROMs should be viewed not as gatekeepers or triggers for palliative care, but as interpretive tools that help clinicians recognise suffering earlier and respond more effectively to what patients themselves report as most important.

Acknowledgments

None.

Footnote

Provenance and Peer Review: This article was commissioned by the editorial office, Annals of Palliative Medicine for the series “Multidisciplinary and Holistic Palliative Care”. The article has undergone external peer review.

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-2026-1-0005/prf

Funding: None.

Conflicts of Interest: Both authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-2026-1-0005/coif). The series “Multidisciplinary and Holistic Palliative Care” was commissioned by the editorial office without any funding or sponsorship. E.O. served as the unpaid Guest Editor of the series and serves as an unpaid editorial board member of Annals of Palliative Medicine from December 2024 to December 2026. The authors have no other conflicts of interest to declare.

Ethical Statement: The authors are accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

Open Access Statement: This is an Open Access article distributed in accordance with the Creative Commons Attribution-NonCommercial-NoDerivs 4.0 International License (CC BY-NC-ND 4.0), which permits the non-commercial replication and distribution of the article with the strict proviso that no changes or edits are made and the original work is properly cited (including links to both the formal publication through the relevant DOI and the license). See: https://creativecommons.org/licenses/by-nc-nd/4.0/.

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