Symptom prevalence in palliative care patients admitted to the emergency department: are there differences between patients with cancer and non-cancer illness?

Introduction

The lack of a single definition for what constitutes a chronic condition has resulted in considerable heterogeneity in estimates (1). However, there is agreement that the prevalence of long-lasting conditions that require ongoing medical attention is greatly rising in developed countries (2). In these countries, although the increased burden of chronic disease is due, for the most part, to an aging population, it is important to acknowledge that these conditions are not limited to the elderly population. In fact, increasing numbers of non-older people are developing some form of chronic illnesses, with over 80% of premature mortality estimated to be attributable to noncommunicable diseases in Europe (3). Life-limiting chronic illnesses are mainly cancer, cardiovascular diseases, chronic obstructive pulmonary disease, chronic kidney disease, chronic liver disease, Alzheimer’s and other dementias, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis, stroke, and human immunodeficiency virus/acquired immunodeficiency syndrome (HIV/AIDS) (4).

The implications for healthcare systems are considerable. Indeed, serious chronic illnesses have been associated with higher levels of health resource utilization, including emergency department (ED) presentations and hospitalizations (5,6). However, acute care hospital-based services are often better designed to treat acute clinical conditions than to manage the needs of patients with serious diseases (7). The goals of care for people living with serious illness are often not to cure but to manage distressing symptoms, enhance functional status, and consequently improve the quality of life (8).

Knowing the prevalence of symptoms in people with advanced serious illness is important for clinical practice (9). Undoubtedly, the suffering of these patients is mainly related to the presence of symptoms that are considered intolerable or that impair the activities of daily living.

In previous research, the prevalence of various symptoms is sometimes reported as being homogeneously distributed among serious illness, and this appears to be a similar pathway toward death for both cancer and non-cancer illnesses (10,11). Whereas pain is the most studied and well-documented symptom in these patients, prevalence studies suggest that it is only one of many distressing symptoms they experience (12). In addition to pain, fatigue, anorexia, dyspnea, depression, nausea, constipation, anxiety, and sleep disturbance are present in more than 20% of patients in multiple studies (9,12).

Many studies have investigated symptom prevalence in patients with cancer, few in non-cancer illness, and very few in these patients admitted to the ED. The aim of this study was to evaluate differences in the prevalence of symptoms in patients with cancer and non-cancer illness who were awaiting hospitalization after ED visit and referred to the hospital palliative care (PC) team. We present this article in accordance with the STROBE reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-25-93/rc) (13).

Methods

Study design

This study is a prospective, observational, cohort study carried out for 2 years [2023–2024] in a 1,063-bed, tertiary level, public, university hospital. This hospital is the biggest in the Piedmont Region and the third largest in Italy. It has an ED that provides patient care 24 hours per day, seven days per week, to all who seek emergency medical aid. More than 40,000 patients per year are seen in the adult Medicine and Neurology sections, which are the two services where patients awaiting for a PC consultation are placed. The hospital holds the national record for annual transplant volume in a single center, encompassing all programs, and is home to the largest comprehensive cancer center in the Piedmont Region.

This study is part of a larger research project assessing the feasibility of ED-initiated screening to identify seriously ill patients early and refer them to a PC team (ClinicalTrials.gov Identifier: NCT04143230). The study protocol was approved by the Institutional Ethics Committee “Comitato Etico Interaziendale A.O.U. Città della Salute e della Scienza di Torino – A.O. Ordine Mauriziano di Torino – A.S.L. TO1” (approval No. 0014892). The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments and was described to ED physicians before the study began. All patients who participated in this study provided written informed consent before enrollment.

Participants

Patients eligible for this study met the following criteria: (I) awaiting hospitalization after an ED visit; (II) had a known diagnosis of a serious illness (i.e., a potentially life-limiting or life-threatening condition); (III) had at least one criterion for a PC assessment; and (IV) had at least one symptom with a score equal or more than 4 in a numeric rating scale (NRS) ranging from 0 to 10. Exclusion criteria for study enrollment were: (I) patients unable to communicate due to mental or physical state; (II) language barrier; (III) age <18 years; and (IV) declined participation in the study.

According to validated tools for identifying patients with PC needs, i.e., the Gold Standards Framework (GSF) Proactive Identification Guidance (PIG) (14), Supportive and Palliative Care Indicators Tool (SPICT^TM) (15), and NECPAL (Necesidades Paliativas) (16), patients living with serious illness are those with metastatic or locally advanced incurable cancer or chronic non-cancer conditions, i.e., heart or vascular disease, respiratory disease, liver disease, kidney disease, neurological disease (stroke, Parkinson’s disease, multiple sclerosis, amyotrophic lateral sclerosis, and dementia) and frailty. The diagnostic categories were formed based on the known disease in the Diagnosis Related Group.

In this study, patients were evaluated using secondary criteria for a PC assessment at the time of hospital admission developed by the Center to Advance Palliative Care (CAPC) (17). These criteria are more specific indicators of a high likelihood of unmet PC needs.

Data collection

According to the literature (9-11,18), we categorized the symptoms as follows: pain, fatigue (including tiredness, weakness, lack of energy), nausea, depression (depressed mood, mood changes, feeling low, miserable, or sad), anxiety (fearful, nervousness, agitation), drowsiness (feeling sleepy, feeling confused, delirium, disorientation, cognitive failure, cognitive symptoms), dyspnea (breathlessness, shortness of breath, trouble with breathing), appetite loss (lack of appetite, anorexia), insomnia (inability to sleep, difficulty or problems sleeping, sleep problems or disturbances, sleeplessness, poor sleep), vomiting (emesis), constipation, diarrhea (loose stool), and well-being (poor sensation of well-being, ‘how you feel overall from best to worst’).

Eligible patients were asked to answer during the medical interview relatively the presence of symptoms and report the symptom intensity using an 11-point NRS ranging from 0 (no symptom) to 10 (worst intensity) over the past 24 hours. According to the literature, we used the score equal or more than 4 for moderate symptom intensity (18-21).

Statistical analysis

Continuous data were presented as median ± interquartile range (IQR). The prevalence of each symptom in the different diagnostic groups was expressed as a percentage. According to validated tools for identifying patients with PC needs (14-16), those with neurological disease and frailty were aggregated into a single group because several general indicators of poor or deteriorating health are common to both.

The prevalence of symptoms among the patient groups was compared using Fisher’s exact test. NRS values were expressed as means (standard deviations), and mean values were compared using Welch’s t-test for independent samples. All reported P values were two-sided, with a conventional significance level of 5%. Data were analyzed using R v. 4.4.3 (R Foundation for Statistical Computing, Vienna, Austria).

Results

Patients

During the study period, 542 adult patients awaiting hospitalization in the ED were referred to the hospital PC team. Among these patients, 416 (77%) met the inclusion criteria and were enrolled in the study: 141 (34%) with cancer and 275 (66%) with non-cancer illness. The flow diagram showing the included cohorts is presented in Figure 1.

Figure 1 Participant enrollment flow diagram.

The median age was 74 years (IQR, 62–80 years) and 82 years (IQR, 74–86 years) for cancer and non-cancer populations, respectively (P<0.001). Females accounted for 46% and 38% for cancer and non-cancer populations, respectively (P=0.21).

The prevalence of symptoms across disease groups is shown in detail in Table 1 and graphically in Figure 2. The comparison of symptom prevalence in cancer vs. non-cancer illness is shown in detail in Table 2 and graphically in Figure 3. Nearly all patients reported at least one symptom ≥4. Compared to non-cancer patients, those with cancer more often experienced pain (49% vs. 31%, P<0.001), fatigue (84% vs. 75%, P=0.02), appetite loss (54% vs. 32%, P<0.001), nausea (22% vs. 13%, P=0.02), vomiting (16% vs. 6%, P=0.004), and diarrhea (11% vs. 4%, P=0.01). In contrast, dyspnea was significantly higher in non-cancer illness (62% vs. 35%, P<0.001). Several symptoms (i.e., insomnia, constipation, drowsiness, anxiety, depression, and well-being) were common in both groups without significant differences.

Figure 2 Prevalence of symptoms across disease groups. Values are expressed as percentages. D, disease; HVD, heart and vascular disease; Neurol, neurological; Respir, respiratory.

Figure 3 Comparison of symptom prevalence in cancer vs. non-cancer populations. Values are expressed as percentages. The prevalence of symptoms among the patient groups was compared using Fisher’s exact test. *, P<0.05; **, P<0.01; ***, P<0.001.

In Table 3, the comparison of mean NRS values [4–10] between cancer and non-cancer populations is presented. Patients with cancer reported significantly higher mean NRS values for most symptoms, whereas non-cancer patients showed higher levels of dyspnea.

Discussion

This prospective, observational, cohort study investigated the prevalence of symptoms in seriously ill cancer and non-cancer patients awaiting hospitalization and referred from the ED to the hospital PC team. Patients with cancer more frequently reported pain, fatigue, nausea, appetite loss, vomiting, and diarrhea. Patients with non-cancer illness more often experienced dyspnea, and insomnia trended towards significance. Several symptoms (i.e., constipation and drowsiness), including psychological and spiritual symptoms (i.e., anxiety, depression, and well-being) were common in both groups without significant differences.

People facing a serious illness experience a significant symptom burden, which often increases in intensity during the last 6–12 months of life. This symptom burden frequently leads them to seek care in an ED (22). These individuals are often admitted to the hospital for urgent, unplanned care as they are unable to receive adequate treatment in an outpatient setting or at home (23). Available data shows that between 30% and 65% of people visited the ED during the last 30 days before death (24). The ED is often the only place that can provide needed interventions (e.g., intravenous pain or antiemetic medications) as well as immediate access to advanced diagnostic tests 24 hours a day, 7 days a week. Alsirafy et al. reported that 77% of patients had at least one ED visit in the last three months of life; similarly, in a cohort followed by a hospital PC team, Brites et al. found that most patients, followed up in PC consultations until death, visited the ED at least once; ED use was associated with hospital death, a higher number of admissions, and longer time spent in acute care, suggesting gaps in anticipatory care and out-of-hours support (25,26).

Traditionally, PC has been focused on patients with cancer (27). Also, some authors stated that PC needs to be provided on basis of need rather than diagnosis (4). Indeed, those affected by serious illnesses differ in their number, clinical characteristics, and treatment requirements. In fact, our study confirms that people with non-cancer illnesses represented the majority of patients with PC needs. Comparing symptom prevalence between patients with cancer and non-cancer illness is complex because of the different stages of the disease (especially in patients with cancer) and the different trajectories of functional decline (especially in patients with non-cancer illness) (8). Most patients with advanced cancer frequently have a period, sometimes years, of good performance status and then a short period of significant decline (28). On the contrary, patients with advanced non-cancer diseases often experience exacerbations of symptoms that can be effectively managed in the hospital, although functional recovery usually does not return to the previous level (8). Patients move in and out of PC depending on disease trajectory around cure, survivorship, and end of life (28).

In this study, we investigated the prevalence of symptoms in PC patients at the time of the ED admission and evaluated 13 symptoms representing each PC domain: physical (pain, fatigue, nausea, drowsiness, dyspnea, appetite loss, insomnia, vomiting, constipation, diarrhea); psychological (depression, anxiety); and spiritual (well-being) (11). According to the World Health Organization (WHO)’s definition, the core component of PC is the relief of suffering caused by symptoms (29). Noteworthy, we found that less than 4% of seriously ill patients awaiting in ED for hospitalization and referred to the hospital PC team had no symptoms with a score ≥4. Indeed, some authors described that patients referred to PC from the ED exhibit more intense acute symptom burden than those referred later from inpatient wards (30,31).

In our study, we found that most patients—regardless of diagnosis—experienced multiple concurrent symptoms, with fatigue, dyspnea, pain, and appetite loss being prominent features. Fatigue was the most prevalent symptom in both cancer (84%) and non-cancer illness (75%), confirming the evidence that fatigue is nearly universal among those with advanced illnesses and is not disease-specific. Despite having a major impact on the quality of life, fatigue remains one of the most under-recognized and under-treated symptoms in PC patients (32). Pain was more frequent in patients with cancer (49%) than in those with non-cancer illness (31%), likely reflecting both the tumor-related mechanisms and the treatment side effects well-documented in oncology populations (27,28,31). Appetite loss was the second most common symptom in both cancer and kidney disease, and was also notable across all other disease groups. Often referred to as anorexia and frequently associated with cachexia, this symptom has a profound impact on patients’ quality of life, nutritional status, and key health outcomes, including survival (33). Dyspnea was reported by 62% of patients with non-cancer disease versus 35% of patients with cancer and this difference was especially pronounced in respiratory disease and heart or vascular disease. In a large cohort of hospitalized patients at the time of admission, a dyspnea score of 4 or higher was present in 43% of patients admitted with respiratory diagnoses and in 25% of those with cardiovascular diagnoses (34). Several studies highlighted that dyspnea in the ED setting is a marker of high distress and an urgent trigger for PC involvement (30,31,35).

In this study, insomnia was reported by all disease groups with percentages ranging from 35% to over 55% confirming that sleep disturbances are highly prevalent in serious illness and must be addressed as part of comprehensive symptom control. Drowsiness was especially high in neurological and liver diseases, reflecting disease-related neurological impairment or medication effects. Gastrointestinal symptoms (i.e., nausea, vomiting, constipation, and diarrhea) were generally less prevalent but more notable in cancer and liver disease. Psychological symptoms (depression and mainly anxiety) were widespread, suggesting the need for individualized psychosocial support. These symptoms likely arise from a combination of disease-related physiological stress, uncertainty about prognosis, limitations in daily functioning, and the emotional burden of chronic illness (36).

The findings of our study are consistent with prior systematic reviews. The Solano et al. review of 64 original studies reported that pain, breathlessness, and fatigue were found among more than half of patients with cancer, AIDS, heart disease, chronic obstructive pulmonary disease, and renal disease, suggesting a shared pathway toward death regardless of diagnosis (10). Moens et al. summarized 143 studies and likewise identified pain, fatigue, anorexia, dyspnea, and worry as problems with ≥50% prevalence across nine malignant and non-malignant conditions (11). Teunissen et al. showed that among patients with incurable cancer, fatigue, pain, and appetite loss commonly exceed 50% prevalence, with nausea frequently present as well (9).

Symptom assessment represents the cornerstone of symptom management. Several studies have examined how the 0–10 rating scale is interpreted by patients; particularly, which cutoffs within the scale correspond to none, mild, moderate, and severe symptom intensity (18). It is well known that there may be important differences in how patients interpret the scale due to variations in language, culture, and patient populations (18). Across 18 studies, the cutoffs for moderate symptom intensity were most often between four and five (18). According to Hui and Bruera (18), we decided to report symptoms that patients rated as having an intensity of four or higher on the rating scale.

In our previous study, we estimated that more than one-third of seriously ill patients awaiting hospitalization after an ED visit had unmet PC needs (37). Building on these data, our hospital has implemented and maintained an inpatient PC team since 2015. The aim is to integrate systematic symptom screening and facilitate early PC referral in the ED, thereby ensuring equitable, timely, and effective symptom relief (38). The issue of whether ED can be considered a point of access to PC has been debated. Indeed, there are a few authors who believe that the ED is not an appropriate setting for either the identification or the management of patients with PC needs (39,40). These authors state that the specific characteristics of the ED and the nature of patient visits often make it difficult to address all components of the end of life care models presented. Conversely, several studies have shown that the ED has frequently become a meeting point between the healthcare system and patients requiring PC (30,31,35,41-55). In fact, there are convincing data demonstrating that early ED-based specialty PC consultations for patients with advanced illness improve quality of life and relieve symptom burden.

Implications and actions needed

Several studies suggest that a substantial number of ED presentations made by PC patients were potentially avoidable (22). Many of these ED admissions were due to uncontrolled symptoms such as dyspnea, pain, constipation, nausea, and vomiting (5,22). Understanding the reasons, a patient with PC needs presents to the ED will allow the development of interventions (i.e., resources needed to deliver community-based services or understanding of the preferences of patients and their families) which may prevent such visits (25,26,56). In fact, the focus of PC is on anticipating patients’ likely needs (i.e., control of symptoms) so that the right care can be provided at the right time. However, there is clear evidence that the full range of services required to support symptom control and to enable death at home are still far from being adequately implemented elsewhere, and are not sufficient to meet the demand for PC services (57).

Sometimes the PC approach is imagined as “one size fits all”, but even then, it may only fit most, not all. In fact, a single solution or approach is not suitable for every PC patient and even for the same patient in every situation. To address the unique needs of PC patients, care models should provide individualized, comprehensive symptom assessment to identify what matters most to each patient throughout the illness trajectory. Care plans should then be continuously adapted as symptoms and goals evolve.

Limitations of the study

This study presents several limitations. First, our results may not be generalizable to other institutions as this is a single-center study carried out in a tertiary hospital functioning as regional referral center for cancer and non-cancer diseases. Similarly, it is not possible to discuss how the present results would compare to similar studies in other countries. In particular, the non-cancer cohort was heavily represented by cardiorespiratory disorders. The small sample size for diseases such as kidney or liver disorders may make our study population unrepresentative of the real-world population. Also, access to free medical care through a universal healthcare system could have an impact on rates of patients presenting to the ED. Second, we arbitrarily defined the lower limit for ‘having a symptom’ as 4 on the 0–10 NRS. However, a score of four or higher is generally considered as moderate or severe in clinical practice. Third, we collected data from patients directly if they were able to answer, excluding those who were unable to communicate due to their state because symptom expression was the main outcome of interest. Finally, patients admitted to ED quite always have a high symptom burden, all of which may impact the prevalence and intensity of their symptoms.

Conclusions

To the best of our knowledge, this is the first prospective study to compare symptom prevalence between patients with cancer and those with non-cancer illnesses receiving PC consultation while awaiting hospitalization in the ED. This study confirms that many seriously ill patients presenting to the ED experience a substantial burden of distressing symptoms. However, the profile differs: pain, fatigue, and gastrointestinal symptoms predominate in patients with cancer, whereas dyspnea is more noticeable in non-cancer illness. These findings contribute to the existing literature by suggesting that a single approach may not adequately address the diverse needs of seriously ill patients presenting to the ED with symptoms causing significant suffering.

In conclusion, data on the prevalence of distressing symptoms among seriously ill patients in the ED should stimulate the development of healthcare organizational responses to ensure that the needs of this growing patient population are adequately met. According to the literature, we believe that evaluation by a PC team of seriously ill patients presenting with burdensome symptoms in the ED could lead to better outcomes in terms of symptom control and care planning. Further randomized controlled trials are needed to establish the efficacy of this promising approach.

Acknowledgments

We thank all physicians and nurses involved in the daily care of patients in our emergency department, which made this study possible.

Footnote

Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-25-93/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-93/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-25-93/prf

Funding: None.

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-25-93/coif). The authors have no 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. The study was conducted in accordance with the Declaration of Helsinki and its subsequent amendments. The study was approved by the Institutional Ethics Committee “Comitato Etico Interaziendale A.O.U. Città della Salute e della Scienza di Torino – A.O. Ordine Mauriziano di Torino – A.S.L. TO1” (approval No. 0014892). All individual participants in this study provided written informed consent before enrollment.

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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