Comparative analysis of symptom burdens and influential factors among diverse terminally-ill patients

Introduction

Terminal illness can be described as an end-stage disease, that is not responsive to curative medical treatment and is expected to result in the patient’s death (1). Patients with terminal illness having less than 12-month prognosis, often experience high symptom burden, causing suffering to both the patient and their families (2,3). The terminal illnesses include cancer and non-cancer diseases, such as motor neurone disease, end-stage renal disease, chronic obstructive pulmonary disease (COPD), Parkinson’s disease, heart failure, dementia and other serious diseases. These terminal illnesses significantly impact the patient’s physiological, psychosocial and spiritual well-being (4). As terminally-ill patients progress through the illness trajectory, their physical and psychosocial conditions are expected to move from stable to unstable and eventually deteriorate (5,6). End-of-life care (EoLC) for patients with terminal illnesses has developed for over five decades. Globally, it is estimated that over 40 million people require EoLC each year, and this number is projected to double by 2060 (7). The demand for EoLC has rapidly increased due to factors such as ageing population, expansion of care to non-cancer diseases, and the impact of the Covid-19 pandemic (8). There is a pressing need to enhance EoLC globally, particularly in supporting traditional medical care for terminally ill patients (9-12).

Previous studies have reported that terminally-ill patients often die with unmet needs (13,14). In recent years, with the expansion of EoLC to include non-cancer patients, understanding the major distressing symptoms related to each diverse terminal illness is crucial for providing appropriate care tailored to meet their specific needs during the end stage of life. The multidimensional symptom burden of physical and psychosocial distress experienced by terminally-ill patients should not be regarded as a ‘normal occurrence’. Instead, symptoms should be thoroughly assessed, screened, diagnosed, addressed and followed up (15). A holistic but concise symptom assessment is recommended for terminally-ill patients to identify their physical and non-physical needs (15,16). Patient-reported outcome measurements (PROMs), which provide a subjective evaluation of patients’ needs (16), are considered the golden standard in symptom assessment. One such PROM is the Integrated Palliative care Outcome Scale (IPOS) which is a 17-item multidimensional assessment for assessing terminally-ill patients’ physical and psychosocial needs (17). The IPOS is widely accepted, reliable and feasible in clinical and palliative care research (17,18).

Most previous studies on the symptoms of terminally-ill patients to date have predominantly focused on patients with cancer and heart failure, with relatively fewer knowledge on major distressing symptoms of other non-cancer patients (19-22). Thus, there is a research gap of comparative study analysis on the perceived symptom burden intensity among diverse patient disease groups. To bridge this research gap, this study employed the IPOS measure to identify and compare the symptom burden intensity perceived by patients with diverse terminal illnesses, namely, cancer, end-stage renal disease, COPD, motor neurone disease, Parkinson’s disease, heart failure, dementia and other serious diseases (such as stroke, hematological disease, multiple sclerosis and liver diseases). With the inclusion of a variety of terminal illnesses, this study aims to provide a comprehensive analysis of the perceived symptom burden intensity among patients from diverse disease groups.

Clinicians are able to predict the probability of symptom outcomes of terminally-ill patients based on the patient’s characteristics and general conditions (23,24). Previous studies have explored patients’ demographic characteristics, such as gender, age, educational level and type of illness, as influential factors of the symptom burden experienced by terminally-ill patients (25,26). The study by Eagar et al. (25) utilized the Symptom Assessment Scale (SAS) to assess the influential factors of symptom severity among patients with both malignant and non-malignant diagnoses. Similarly, Fei et al., (26) employed IPOS and Clinical Respiratory Questionnaire to explore the influential factors among patients specifically diagnosed with COPD. Building upon the existing knowledge, this study sought to further explore the influence of patients’ demographics and clinical factors on the perceived symptom burden intensity assessed by the among diverse terminally-ill patients. The IPOS measure employed in this study allows for a comprehensive assessment of the influential factors contributing to various categories of symptom burdens experienced by terminally-ill patients. The categories of symptoms from the IPOS scale include IPOS total score and subscales of physical symptoms, emotional symptoms and communication/practical issues (17,18).

Specifically, the research questions guiding this study are as follows: (I) what are the major distressing symptoms reported by the overall terminally-ill patients, cancer and non-cancer patients? (II) Are there differences in perceived symptom burden intensity across diverse patient disease groups? and (III) what are the demographics and clinical factors influencing the perceived intensity of symptom burden in terms of the IPOS total and subscale scores among terminally-ill patients? It is hypothesized that there will be significant differences in the perceived symptom burden intensity among the eight disease groups of terminally-ill patients, due to their varying symptom profiles. Demographics and clinical factors, such as the patient’s gender, age, marital status, educational level, co-residency status, caregiver’s relationship and type of illness, may influence the experience and perception of symptoms among terminally-ill patients. Thus, it is expected that these factors will have significant effects on the perceived symptom burden intensity in terms of the IPOS total and subscale scores. We present this article in accordance with the STROBE reporting checklist (available at https://apm.amegroups.com/article/view/10.21037/apm-23-565/rc).

Methods

Setting and study design

The Hong Kong Jockey Club Charities Trust has commenced a home-based psychosocial EoLC service model in Hong Kong since 2016. This EoLC service model offers a range of essential and supportive services to terminally-ill patients and their families during the end-of-life journey. The EoLC service encompasses psychosocial, physical and practical elements, including psychoeducation, emotional counselling, activities that generate joyful experiences, legacy activities, wish fulfilment, spiritual care, symptom management, physical exercises, and practical support (such as equipment loans, escort services, home cleaning and family conferences about caregiving arrangements) (18,27). Recipients of this EoLC were patients with a prognosis of less than 12 months, who were referred by their healthcare providers. The primary diagnosis of the patients included cancer and non-cancer diseases. Similar to the previous study by Chow et al. (18), questionnaire data for holistic symptom assessment and evaluation were collected independently by the research team at three timepoints: baseline, one month after service and three months after service. Perceived intensity of symptom burden over the past week was rated by the patients themselves or assisted by their proxy (e.g., case managers, caregivers). The baseline data was extracted for analysis in this cross-sectional study.

Non-probability sampling technique, specifically purposive sampling was employed for the study sample size. The patient eligibility criteria for this study were: (I) enrolled in the EoLC project from January 2016 to December 2019, (II) consent to participate in the study and (III) completion of the baseline assessment. These criteria help address potential sources of bias by providing a consistent participant group, obtaining informed consent, and establishing a baseline assessment for comparison purposes.

Measured variables

The primary outcome variable was the perceived symptom burden intensity, which was measured by the IPOS. The IPOS is a well-validated and reliable multidimensional symptom assessment for individuals with advanced illness (17). It consists of 17 items, and each item is rated on a 5-point Likert scale ranging from 0 to 4 (0, not at all; 1, slightly/occasionally; 2, moderately/sometimes; 3, severely/most of the time; 4, overwhelmingly/all the time). There are ten items measuring physical symptoms, four items measuring emotional symptoms and three items measuring communication/practical issues (17). The total 17-item IPOS scale score ranged from 0 to 68. The total perceived symptom burden intensity score for physical symptoms, emotional symptoms and communication/practical issues subscales were 40, 16 and 12, respectively. Cronbach’s alpha values for the 17-item IPOS total scale score and the three subscales (physical symptoms, emotional symptoms, communication/practical issues) were 0.86, 0.81, 0.80 and 0.62, respectively.

The demographic characteristics and clinical information of the terminally-ill patients were obtained from questionnaire data. This study explored the demographic and clinical characteristics as predictor variables of the perceived symptom burdens, categorized as IPOS total score and its three subscales (IPOS physical symptoms, IPOS emotional symptoms, and IPOS communication/practical issues). The predictor variables explored in this study were gender (male vs. female), age (<80 vs. ≥80 years), educational level (below secondary vs. above secondary), marital status (unmarried vs. married), co-residency status (living alone vs. living with others), caregiver’s relationship to the patient (spouse vs. non-spouse) and main type of terminal illness (cancer disease group vs. non-cancer disease group).

Statistical methods

Descriptive and inferential statistical analyses were conducted using IBM SPSS 27.0 software and Microsoft Excel. Demographics, clinical information and perceived symptom burden intensity were summarized using descriptive statistics of frequency and percentage distribution. The percentage of missing data for the variables of interest was less than 5%.

Relative importance index (RII) method was used to analyze the 17 IPOS items to determine the symptom distress rankings among the terminally-ill patients. RII is a descriptive analytical method used to determine the level of importance/magnitude of each individual factor relative to other factors on a Likert scale. The RII is calculated by assigning weights to each variable based on their relative importance, and then comparing the magnitude of the weights in ranks. Microsoft Excel was used for the RII analysis, which is regarded as a more accurate ranking procedure than raw scores from descriptive methods like mean and frequency distributions (28). The RII method is popular in the construction literature, which has been used to rank various factors to determine the most significant factors for appropriate decision-making and service directions (28,29).

The original IPOS 0–4 rating was converted to 1–5 rating, so that participants in the “not at all” rating group are included in the RII calculation. The standardised RII formula in percentage form (%) used in this study was as follows (29):

RII=∑wAN∗100=5n5+4n4+3n3+2n2+1n15N∗100[1]

Where:

w = weighting given by the respondent to each factor from the 5-point Likert scale.

n₁ = number of respondents for 1, not at all; n₂ = number of respondents for 2, slightly/occasionally; n₃ = number of respondents for 3, moderately/sometimes; n₄ = number of respondents for 4, severely/most of the time; n₅ = number of respondents for 5, overwhelmingly/all the time.

A = highest weight (i.e., converted to 5 in this study)

N = total number of respondents (i.e., from 1,549 participants)

By calculating the RII for each item, the study reveals the symptoms that required the most attention and intervention for symptom distress management at the end of life for the terminally-ill patients. A comparative analysis was conducted using the RII scores to determine the symptom burden rankings among the eight diverse disease groups in this study population (cancer, end-stage renal disease, COPD, motor neurone disease, Parkinson’s disease, heart failure, dementia and other serious diseases). In addition, the RII scores were utilized to identify the most distressing symptoms among the groupings of cancer diseases and non-cancer diseases.

One-way analysis of variance (ANOVA) was employed to determine whether there were significant differences in the mean scores of symptom burden intensity reported by diverse terminally-ill patients. Prior to conducting inferential statistics, the normality of the data distribution for the 17 IPOS items was tested. The data violated the Kolmogorov-Smirnov significance statistics (P<0.05). Logarithmic transformation was used to normalize the data for parametric tests. The generalized linear regression (GLR) analysis was employed to examine the association between perceived symptom burdens and its influential factors (patients’ gender, age, marital status, educational level, co-residency status, caregiver’s relationship to the patient, and main type of illness). The GLR models employed four categories of perceived symptom burdens as dependent variables, including IPOS total score, as well as subscales of physical symptoms, emotional symptoms and communication/practical issues.

Ethics

The ethics of this study were approved by the Human Research Ethics Committee of the University of Hong Kong (Reference number: EA220207). All study participants provided either verbal or written informed consent. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013).

Results

Participants

A total of 2,092 patients enrolled in the EoLC service between January 2016 and December 2021. Of these, 94 patients refused to participate in the study. Among the 1,998 patients who consented to participating in the study, 354 patients could not complete the baseline questionnaire assessment due to death, frailty, unfit to participate, withdrawal from the service, or the assessment not being arranged on time at the baseline upon intake of cases. Additionally, there were 95 cases of incomplete or missing data. As a result, the final sample consisted of 1,549 eligible terminally-ill patients, who completed the baseline assessment. The recruitment process for study participants is presented in Figure 1.

Figure 1 Flow diagram of study recruitment. IPOS, Integrated Palliative care Outcome Scale.

Table 1 presents the demographics and clinical characteristics of the participants. The participants were adults aged between 60 and 105 years old, with slightly more men (53.1%) than women (46.6%). Over half of the participants were married or coresiding, had education below secondary schooling and were not living alone. The primary caregivers of the participants were their spouses (34.9%), children (27.6%) and other relatives/friends (35.0%). The primary diagnoses of the participants were cancer (n=827), end-stage renal disease (n=298), COPD (n=129), motor neurone disease (n=67), Parkinson’s disease (n=54), heart failure (n=53), dementia (n=42) and other serious diseases (including stroke, hematological disease, multiple sclerosis and liver diseases) (n=78).

Symptom distress rankings

As shown in Table 2, poor mobility (RII =64.4%) was the most distressing symptom reported by the overall terminally-ill patients. This was followed by perceived family anxiety (RII =63.5%) and the inability to share feelings (RII =61.4%). Weakness/lack of energy (RII =58.1%) and hardly feeling at peace (RII =50.7%) were ranked fourth and fifth respectively in terms of symptom distress. The four IPOS emotional symptoms and three communication/practical issues were ranked among the 11 most distressing symptoms by the overall terminally-ill patients.

The four most distressing symptoms commonly identified in the overall terminally-ill patients, cancer patients and non-cancer patients were poor mobility, inability to share feelings, family anxiety and weakness/lack of energy (see Figure 2). However, these symptom distress rankings differed slightly among cancer and non-cancer disease groups. Poor mobility was ranked as the most distressing symptom by non-cancer patients (RII =65.7%), but ranked as the second most distressing symptom by the cancer patients (RII =63.3%). Perceived family anxiety was ranked the most distressing symptom by cancer patients (RII =66.1%), but ranked third by non-cancer patients (RII =60.2%). Sharing feelings was ranked as the second most distressing symptom by non-cancer patients (RII =61.3%) and third by cancer patients (RII =61.5%). Weakness/lack of energy was ranked as the fourth most distressing symptom by both cancer patients (RII =61.3%) and non-cancer patients (RII =54.3%).

Figure 2 Symptom burden ranks among overall terminally-ill patients, cancer patients and non-cancer patients. RII, relative importance index.

Perceived physical symptom burden intensity among diverse patient disease groups

The one-way ANOVA analyses (see Table 3) revealed that perceived physical symptom burden intensity by the eight disease groups of terminally-ill patients (cancer, end-stage renal disease, COPD, motor neurone disease, Parkinson’s disease, heart failure, dementia, and other serious diseases) were significantly different (Fs>7.68, P<0.05). The differences in the perceived intensity of symptom burden were particularly high (F>16.0, P<0.05) for the symptoms of shortness of breath (F=36.91, P<0.05), drowsiness (F=16.41, P<0.05) and constipation (F=16.12, P<0.05).

Symptom distress rankings of the 17 symptoms in each disease group of terminally-ill patients (see Table 3) also showed some similarities and differences. Shortness of breath was ranked as the most distressing symptom by COPD patients (RII =63.8%), but as the 13^th and 16^th by cancer patients and patients with Parkinson’s Disease, respectively. Similarly, poor mobility was ranked as the most distressing symptom by patients with motor neurone disease (RII =85.1%), Parkinson’s disease (RII =75.1%), other serious diseases (RII =73.1%), heart failure (RII =69.0%), dementia (RII =67.8%), and end-stage renal disease (RII =62.9%). However, poor mobility was ranked as the second and fourth most distressing symptom by the cancer patients (RII =63.3%) and COPD patients (RII =52.2%), respectively. Among the overall terminally-ill patients, vomiting was ranked as the 17^th most distressing symptom.

Perceived burden intensity of IPOS emotional symptoms and communication/practical issues among diverse patient disease groups

The one-way ANOVA analyses (see Table 3) revealed some statistically significant differences in the perceived burden intensity of IPOS emotional symptoms among the terminally-ill patients. Specifically, perceived family anxiety (F=12.47, P<0.05), patient anxiety (F=11.61, P<0.05), depression (F=9.16, P<0.05) and hardly feeling at peace (F=6.25, P<0.05) showed significant differences. However, there were no significant differences in perceived burden intensity for the IPOS communication/practical issues among the terminally-ill patients.

The RII analysis of the IPOS emotional symptoms and communication/practical issues distress rankings among each disease group of terminally-ill patient (see Table 3), also showed similarities and differences. Perceived family anxiety, for instance, was ranked as the most distressing symptom by the cancer patients (RII =66.1%), but ranked as the second symptom burden by patients with motor neurone disease (RII =75.6%), dementia (RII =61.9%) and the other serious disease group (RII =63.9%). Relative to other symptoms, perceived family anxiety was ranked as the third most distressing symptom by other non-cancer patients (Parkinson’s disease RII =60.9%, end-stage renal disease RII =58.6%, heart failure RII =58.4%, and COPD RII =53.4%).

The symptom distress rankings also revealed that all four IPOS emotional symptoms and three IPOS communication/practical issues were among the 12 most distressing symptoms by the diverse patient disease groups.

Influential factors of patient’s perceived symptom burden intensity

The results of GLR (see Table 4) indicated that the main type of illness (whether cancer or non-cancer) significantly predicted perceived IPOS total and subscale symptom burden intensity. Specifically, non-cancer patients were more likely to perceive higher burden of IPOS physical symptoms (B=3.40, P<0.001), IPOS emotional symptoms (B=0.46, P=0.05) and IPOS communication/practical issues (B=0.93, P<0.001), as well as to have a IPOS total score (B=5.30, P<0.001), than cancer patients. Likewise, older patients aged 80 and above reported higher burden of IPOS physical symptoms (B=0.59, P=0.25), IPOS emotional symptoms (B=1.07, P<0.001) and IPOS communication/practical issues (B=0.65, P<0.001), as well as higher IPOS total score (B=2.51, P=0.02), than the younger counterparts below 80 years old.

Patients’ gender, marital status and co-residing status significantly predicted some perceived IPOS subscale symptom burden intensity. Female patients reported higher IPOS emotional symptom burden (B=0.51, P=0.04) compared to male patients. Patients who were married or cohabiting reported higher IPOS total score (B=2.17, P=0.03), IPOS physical symptom burden intensity (B=1.44, P=0.03), and IPOS emotional symptom burden intensity (B=0.75, P=0.01), than those who were single/widowed/separated/divorced. Patients who lived alone reported higher burden of IPOS communication/practical issues (B=0.79, P=0.01), as compared to those who lived with others. Other demographic characteristics, such as educational level and relationship with the primary caregiver, did not significantly influence perceived symptom burden intensity (Ps>0.05).

Discussion

Data on the perceived symptom burden intensity of diverse patient disease groups are relatively scarce. As people approach the end of life, they and their families often experience conflicting and complicated emotions (30,31). The suffering from a terminal illness encompasses various dimensions, including physical, psychosocial and spiritual aspects (4). Patients’ holistic health and well-being, including their physical health, psychosocial well-being and major needs, play a crucial role in determining their quality of life, functioning and chances of survival (17,32,33). This study aimed to assess the perceived symptom burden intensity and identify its influential factors among diverse patient disease groups.

Universality of major distressing symptoms of terminally-ill patients

This study identified four most distressing symptoms (poor mobility, perceived family anxiety, inability to share feelings and weakness/lack of energy) among the overall terminally-ill patients, with a RII exceeding 50.0%. The comparison of the perceived symptom burden intensity between cancer and non-cancer patients also revealed these three main distressing symptoms. Similar findings were reported in previous studies, that have examined both cancer and non-cancer disease population. For instance, the findings support the study by Chow et al. (18) in Hong Kong, which found that poor mobility, inability to share feelings, weakness/lack of energy, and perceived family anxiety were the four main distressing symptoms among 195 terminally-ill patients in Hong Kong. A study by Murtagh et al. (17) also identified perceived family anxiety, unmet information needs, weakness/ lack of energy, and poor mobility as the four main distressing symptoms with 376 terminally-ill patients in the UK and Germany. Similarly, de Nooijer et al. (34) reported that weakness/lack of energy, poor mobility, perceived family anxiety, hardly feeling at peace and inability to share feelings were highly distressing symptoms among 37 terminally-ill patients in Belgium.

Whilst, the overall trend of most distressing symptoms (poor mobility, perceived family anxiety, inability to share feelings, and weakness/lack of energy) is consistent across the mentioned studies, there were some slight variations in the symptom distress rankings across these studies. The variations may arise due to the specific demographic characteristics of the participants, such as their age, gender, and clinical characteristics (25,26). The variations can also be attributed to differences in geographical context or sample. For instance, cultural beliefs and practices related to illness and EoLC may differ among countries (27), leading to differences in how patients perceive and express their distressing symptoms. Additionally, healthcare systems and resources may vary across different regions (4), leading to differences in the availability and effectiveness of symptom management interventions, which can impact the reported symptom distress rankings. Moreover, the sample sizes in these studies can also contribute to variations in the symptom distress rankings. Smaller sample sizes, typically below 50, may not accurately represent the entire terminally-ill population, leading to greater potential for skewed results. On the other hand, larger sample sizes, often above 500, provide more robust data and increase the generalizability of the findings (35).

Comparative analysis of the perceived symptom burden intensity across diverse patient disease groups

This study revealed significant differences in the perceived symptom burden intensity for all ten IPOS physical symptoms among eight diverse disease groups of terminally-ill patients. The physical symptoms that showed the highest significant differences in perceived symptom burden intensity among the diverse patient disease groups were shortness of breath, drowsiness and constipation. There were also significant differences in the perceived burden intensity of emotional symptoms. However, there were no differences in the perceived burden intensity of IPOS communication/practical issues (inability to share feelings, unmet information needs and unaddressed practical issues) among diverse patient disease groups. Regarding the symptom distress ranking, there were similarities and differences among the diverse patient disease groups. Poor mobility is consistently ranked as the most distressing symptom among various disease groups, such as patients with motor neurone disease, Parkinson’s disease, heart failure, dementia, end-stage renal disease and the other serious disease group (including stroke, hematological disease, multiple sclerosis and liver diseases). These terminal illnesses often result in limitations in physical functioning, which contributes to poor mobility being ranked as the most distressing symptom among these patients.

However, the study revealed that cancer patients ranked perceived family anxiety as the most distressing symptom, while COPD patients ranked shortness of breath as the most distressing symptom. These findings are consistent with previous studies conducted in different geographical regions for specific disease groups, as they revealed similar ranking of the most distressing symptoms among cancer, COPD and heart failure patients. For instance, a study by Oriani et al. (36) conducted in United Kingdom among 102 patients with advanced chronic heart failure, also identified poor mobility as the most distressing symptom among the heart failure patients. Heart failure patients experience poor mobility as a result of compromised cardiac function (36). The impact of poor mobility on their daily lives, independence, and quality of life may contribute to its high ranking as a distressing symptom among heart failure patients. Similarly, the study by Antunes et al. (15) conducted in Portugal among 109 cancer patients revealed family anxiety as the most distressing symptom of cancer patients. Cancer is a complex illness that has profound effects on both the physical and emotional well-being of patients and their families (20,33). The concern for the well-being and support of their loved ones can contribute to the prominence of family anxiety as the most distressing symptoms for cancer patients. Furthermore, a study conducted by Fei et al. (26) in China among 450 COPD patients also identified shortness of breath as the most distressing symptom among COPD patients. Since, COPD primarily affects the respiratory system, the direct and immediate impact of shortness of breath on their quality of life makes it a most distressing symptom for COPD patients (26).

These findings underscore the importance of recognizing and understanding the specific distressing symptoms experienced by different disease groups. This knowledge enables healthcare providers to effectively address patients’ crucial needs, by providing tailored support and interventions.

Perceived intensity of psychosocial symptom burden are higher than that of the physical symptom burden

There is often a lack of emphasis on the psychosocial well-being of patients, with a disproportionate focus on the physical conditions of patients under palliative care (17,37,38). Our study found that both cancer and non-cancer patients ranked psychosocial symptoms (i.e., IPOS emotional symptoms and IPOS communication/practical issues) as more distressing than IPOS physical symptoms.

Perceived family anxiety emerged as patients’ most distressing emotional symptoms, and had a higher symptom distress ranking than their own anxiety. This finding aligns with a previous research by Chow et al. (18) and supports the notion put forth by Sun (39) that Chinese culture places a greater emphasis on concern for others rather than for themselves. Improvements in patients’ psychosocial well-being have a transformative impact on their holistic health and also benefit their family members (40). Thus, psychosocial care is crucial for patients’ holistic health and well-being.

These findings underscore the importance of EoLC interventions to prioritize psychosocial support encompassing emotional support, communication and practical support. Such interventions were found to have direct effects on improving or stabilizing patients’ physiological conditions (18). Another study by Jiao and Chow (41), which utilized network analysis, identified significant connections between physical and psychosocial symptoms, including anxiety-pain, depression-constipation, and perceived family anxiety-poor appetite. These findings suggest that improving psychosocial symptoms may contribute to the amelioration of physical symptoms.

Influential factors associated with perceived symptom burden intensity

The study revealed that the main type of terminal illness (whether cancer or non-cancer) played a significant role in the perceived burden intensity of symptoms, in terms of the IPOS total score and subscale scores (IPOS physical symptoms, IPOS emotional symptoms, IPOS communication/practical issues). Specifically, our study found that non-cancer patients experienced higher levels of symptom burden intensity compared to cancer patients. This difference in symptom burden may be attributed to the fact that non-cancer terminal illnesses tend to have a wider range of symptoms and complications, compared to cancer (42). Cancer is often characterized by well-known symptoms, and there has been significant research and development in managing the symptoms of cancer patients (43,44). On the other hand, non-cancer terminal illnesses such as heart disease, end-stage renal disease, kidney failure, or respiratory diseases may present a broader spectrum of symptoms for which there may be less established management strategies (43,45). Furthermore, the varying prognosis and time frame of different terminal illnesses can complicate symptom management for non-cancer patients (42,46). Non-cancer terminal illnesses often have more uncertain prognoses, making it difficult to anticipate and effectively manage their symptoms (46). Comparatively, cancer may have predictable stages, and both cancer patients and healthcare providers may have a better understanding of the expected symptom burden at each stage (47). These findings emphasize the need for increased research and allocation of resources towards improving symptom management for non-cancer patients.

Patients’ age also significantly influenced IPOS total score and various subscale scores. Specifically, older patients aged 80 and above reported higher levels of perceived burden intensity of symptoms in terms of IPOS total score, IPOS emotional symptoms and IPOS communication/practical issues, compared to their younger counterparts aged below 80. These findings may be attributed to factors commonly associated with advanced age, including an increased prevalence of chronic illnesses (48), decline in physical and cognitive function (49), accumulated life stressors (50), and reduced social support (51), which may be more pronounced in the older age group. However, there was no significant difference in the perceived symptom burden intensity of IPOS physical symptoms between the older patients and their younger counterparts. This suggests that terminally-ill patients, regardless of age, experienced a similar level of physical burden intensity (18). Notwithstanding the study findings, in terms of IPOS total score, underscore the importance of enhancing care for older adults aged 80 years and above, especially considering that this age group represents the largest segment of the growing global population, as indicated by the World’s Population Prospects, 2022 version. Furthermore, there is a significant increase in the global population of individuals aged 80 and above, with projections suggesting that this segment will triple in number from 157 million in 2022 to 459 million in 2050 (52). Increasing care for older adults age 80 years and above is particularly relevant in Hong Kong, given its substantial population of older adults and a long-life expectancy.

The findings of the study also revealed a statistically significant effect of gender (male vs female) on perceived burden intensity of IPOS emotional symptoms, with females reporting higher levels of emotional symptoms compared to males. This finding is consistent with previous studies suggesting that females are more likely to express and communicate their emotions than males (53,54). Regarding the other symptom burden categories of IPOS total score, IPOS physical symptoms or IPOS communication/practical issues, there was no statistically significant effect of gender on their perceived burden intensity. This suggest that there were no significant differences in the perceived burden intensity of symptoms related to physical health and communication/practical challenges experienced by males and females. However, the study by Eagar et al. (25) found that female patients reported fewer severely distressing physiological symptoms prior to death than the male patients. On the contrary, the study by Fei et al. (26) found that females with advanced stage of disease were more likely to experience physiological symptoms such as poor appetite, insomnia, cough and dry mouth, compared to their male counterparts. These differences in results may be due to variations in disease progression, treatment responses, or individual differences in symptom perception and reporting. Therefore, further research is necessary to explore the underlying mechanisms and contributing factors to better understand the gender differences in perceived symptom burden intensity in diverse patient populations.

The presence of a partner or significant other can offer emotional and practical support, which can aid in coping with symptoms and their associated burden (55,56). However, the study findings indicate that married or cohabitating patients reported significantly higher levels of perceived symptom burden intensity in terms of the IPOS total score, physical symptoms and emotional symptoms, compared to their unmarried counterparts (single, divorced or widowed). These results may potentially be attributed to various factors related to their relationships such as caregiver roles, the level of understanding, empathy from the partner and potential conflicts arising from the illness. Such dynamics within relationships can significantly impact how individuals perceive and experience their symptom burden (57-59). Additionally, the presence of a partner can lead to increased awareness and attention to symptoms, further influencing the perceived burden. The study also revealed that marital status did not predict the perceived intensity of IPOS communication/practical issues burden. This suggests that the presence or absence of a partner may not have a significant impact on the perceived burden specifically related to communication or practical challenges. Other factors, such as individual coping strategies or external support systems (50) may play a larger role in this aspect of symptom burden. Further research and exploration of individual experiences and relationships are needed to better understand the reasons behind the differences in perceived symptom burden intensity between married or cohabitating individuals and their unmarried counterparts.

Although marital status did not have significant effect on the perceived burden intensity of IPOS communication/practical issues, the study found that patients who live alone reported a slightly higher perceived burden intensity in these areas, compared to patients who live with family/friends. This implies that patients who live alone face additional challenges in terms of communication and practical assistance, which could contribute to an increased perception of burden in these areas. These challenges could be attributed to limited social interactions and absence of regular assistance in managing practical aspects of daily life for individuals living alone (60,61). Effective strategies to improve communication channels and offering practical assistance would be crucial to alleviate these perceived burdens for patients who live alone. The study also found that co-residency status, whether living alone or with family/friends, did not significantly predict the perceived burden intensity of IPOS total score, IPOS physical symptoms or IPOS emotional symptoms. These findings imply that the presence or absence of family members/friends in the living arrangement does not necessarily alleviate or exacerbate the symptom burden experienced by terminally-ill patients. These findings underscore the importance for healthcare providers to recognize and address the specific needs of patients who live alone, ensuring that adequate and timely support is provided for them during this crucial stage of their lives.

The study found no significant association between patients’ educational level or primary caregiver’s relationship to the patient and the perceived burden intensity of symptoms across the various categories (IPOS total score, IPOS physical symptoms, IPOS emotional symptoms, IPOS communication/practical issues). These results indicate that there were no differences in the symptom burden intensity experienced by patients, regardless of whether they were cared for by a spouse or a non-spouse (such as children, other relatives or friends), as well as whether they had a higher or lower level of education. Thus, our study’s results refute the hypothesis that these factors are associated with perceived symptom burden intensity. The study conducted by Chow et al. (18) aligns with our findings, as it also revealed that patients’ demographic characteristics, including educational level and caregiver’s relationship with the patient, were not associated with changes in the symptoms of terminally-ill patients. These results imply that these demographic factors may not be highly relevant when conducting high-risk screening or developing tailored interventions for terminally-ill patients.

These findings emphasize the need for countries to pay more attention to improving EoLC service interventions to address the high intensity of symptom burden experienced by high risk patient groups, such as non-cancer terminal patients, older aged patients (80 years and above), female patients, married or cohabitating patients, and patients who live alone. Perception of high symptom burden often leads to higher healthcare resource utilization (44,62,63). Due to frailty, terminally-ill patients often require extended care after diagnosis and post-hospital discharge (35,64). Research indicates that most terminally-ill patients prefer receiving EoLC at home (27). Providing care in community settings, such as nursing or residential care homes, as well as patient’s own home, can help reduce unnecessary prolonged hospitalization particularly for patients in need of long-term care (65,66). EoLC service interventions should, therefore, be made accessible in diverse community settings to accommodate the needs of terminally-ill patients, especially older non-cancer patients.

Conceptual contributions

This study is the first to assess and compare the perceived symptom burden intensity of patients with diverse terminally illnesses, including patients with cancer, end-stage renal disease, COPD, motor neurone disease, Parkinson’s disease, heart failure, dementia, and other serious disease group (including stroke, hematological disease, multiple sclerosis and liver diseases). While previous studies provide valuable insights into the symptom distress of terminally-ill patients, there is limited research specifically examining how symptom distress ranking varies among different disease groups. Previous studies have primarily focused on a single disease group such as cancer patients or non-malignant patients such as heart failure or dementia patients. The RII method provided symptom distress rankings for the 17 IPOS symptoms. Reviewing the most distressing symptoms of terminally-ill patients and the influential factors contribute to the growing body of knowledge in the EoLC. The study highlights the main type of illness (whether cancer or non-cancer) as a significant factor affecting perceived symptom burden intensity of terminally-ill patients. These findings thus have significant implications for EoLC literature and can serve as a theoretical reference for further related studies. Further studies should be conducted on EoLC interventions and research with a specific focus on patients with various non-cancer conditions, as the majority of EoLC and palliative care supports primarily target advanced cancer patients.

Clinical and practical implications

The study findings have practical implications for interdisciplinary professional teams involved in EoLC interventions. Understanding the perceived symptom burden intensity and its influential factors for terminally-ill patients is crucial for improving EoLC and enhancing patient outcomes. This study revealed the top three common major distressing symptom burdens for all disease groups were poor mobility, perceived family anxiety and sharing feelings. The results suggest that the EoLC service intervention provided to patients should include intensive support during the first month to address these major distressing symptoms and immediate needs identified during the baseline assessment. Practical supports, such as escort and equipment loans, are crucial in addressing the common concern of poor mobility among terminally-ill patients. Family-centered care interventions should be incorporated into EoLC intervention to address patients’ concern about family anxiety, including facilitating communication between family members and individuals with a terminal illness. Given the high perceived intensity of IPOS emotional symptom burden as compared to that of IPOS physical symptom burden among terminally-ill patients, it is crucial to provide emotional support at the end-stage of life. Additionally, the high perceived intensity of inability to share feelings, unmet information needs and unaddressed practical issues as compared to that of IPOS physical symptoms among the terminally-ill patients highlight the need for practical care and communication support in EoLC for all terminally-ill patients. The service team can adjust their focus on addressing the major distressing symptoms reported by individual patients or patient groups, in order to improve or stabilize their conditions. A 3Ps assessment tool was developed in the JCECC (Jockey club End-of-life Community Care) Project under the ICEST (The Integrated Community End-of-Life Care Support Teams) Model in order to deal with the Physical symptoms, Practical and Psychosocial needs (see for details, https://foss.hku.hk/jcecc/en/innovative_service/the-integrated-community-end-of-life-care-support-teams-icests/).

The varying intensity of symptom burden experienced by the diverse patient disease groups, highlights the uniqueness of each disease group and emphasizes the importance of assessing and addressing the specific needs of individual patients. By identifying the major distressing symptoms and exploring the differences in perceived symptom burden intensity across diverse patient disease groups, tailored interventions can be developed to manage their symptoms effectively and to provide the crucial care during their critical phase of life. To provide tailored care support, screening for high-risk groups is also crucial. Special attention should be focused on non-cancer terminal patients and older aged patients (80 years old and above), as they are more likely to experience higher burden of the multiple symptoms. Emotional support is needed especially for female patients and those who are married or cohabiting. Particular attention should also be given to patients who live alone for their needed communication and practical support. The findings of this study offer valuable insights into clinical care in an area that is often overlooked.

Limitations of the study

This study has some limitations. First, the study was conducted in a Hong Kong-Chinese context, limiting the generalizability of findings to other countries and contexts. Secondly, different sample sizes for the diverse patient disease groups may result in a lower level of evidence compared to using equal sample sizes. Also, the data analysed for this study were completed by the patients themselves or assisted by their proxy in filling the questionnaire (either family caregiver or professional worker), so their responses may be affected by reporting bias, memory loss, forgetfulness or desirability. Another limitation of this study is that it did not explore the impact of the COVID-19 pandemic on the results, as the data collection partially took place during the pandemic. This raises the question of whether the pandemic and the measures implemented to control the virus, could have influenced the results, particularly in relation to emotional distress and social isolation due to quarantine. Future research could conduct a comparative analysis to explore the symptom burden intensity before and after the COVID-19 pandemic, allowing for a better understanding of any potential changes or differences in symptoms experienced by terminally-ill patients during unprecedented times.

However, despite these limitations, this study provides valuable insights into the symptom burden experienced by diverse disease groups of terminally-ill patients. Further studies should aim to validate patients’ self-reports by comparing them with professional staff proxy-reports. Longitudinal research with an equivalent sample distribution among diverse patient disease groups is also highly recommended.

Conclusions

This study conducted a comparative baseline data analysis of 1,549 terminally-ill patients enrolled in an EoLC intervention in Hong Kong. The findings indicated that poor mobility, perceived family anxiety, and sharing feelings with family/friends were the top three most distressing symptoms among the terminally-ill patients. Furthermore, the study examined the differences in perceived symptom burden intensity among the diverse disease groups of terminally-ill patients (cancer, end-stage renal disease, COPD, motor neurone disease, Parkinson’s disease, heart failure, dementia, and other serious diseases). The results revealed statistically significant differences in both physical and emotional symptom burden intensity across the diverse patient disease groups. For instance, cancer patients reported perceived family anxiety as the most distressing symptom, while COPD patients ranked shortness of breath as their most distressing symptom. Additionally, poor mobility was ranked as the most distressing symptom by several disease groups, including motor neurone disease, end-stage renal disease, Parkinson’s disease, heart failure, dementia and the other serious disease group (including stroke, hematological disease, multiple sclerosis and liver diseases). The main type of terminal illness, whether cancer or non-cancer, was a profoundly significant factor that influenced the perceived symptom burden categories of IPOS total score and the three subscales of physical symptoms, emotional symptoms and communication/practical issues. Patients’ age and marital status were also found as significant influential factors of IPOS total score.

These findings highlight the importance of streamlining the EoLC service process to improve patient outcomes, particularly for non-cancer patients, patients aged 80 or above, and those who are married. The study recommends that agencies refer patients earlier to allow sufficient time for EoLC interventions to address their complex needs, aligning with the United Nation’s health-related sustainable development goals. Further studies could conduct comparative assessments of symptom burden intensity among terminally-ill patients in different healthcare settings or countries. Additionally, exploring the influence of cultural beliefs, healthcare systems, and social support networks on the symptom burden intensity experienced by diverse groups of terminally-ill patients, would provide valuable insights for improving EoLC interventions.

Acknowledgments

The authors were grateful to all study participants, their family and collaborating NGO partners for their help in obtaining the data for this study.

Funding: This study was initiated and funded by the Hong Kong Jockey Club Charities Trust (grant No. 2022-0014-001).

Footnote

Reporting Checklist: The authors have completed the STROBE reporting checklist. Available at https://apm.amegroups.com/article/view/10.21037/apm-23-565/rc

Data Sharing Statement: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-565/dss

Peer Review File: Available at https://apm.amegroups.com/article/view/10.21037/apm-23-565/prf

Conflicts of Interest: All authors have completed the ICMJE uniform disclosure form (available at https://apm.amegroups.com/article/view/10.21037/apm-23-565/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 ethics of this study were approved by the Human Research Ethics Committee of the University of Hong Kong (Reference number: EA220207). All study participants provided either verbal or written informed consent. The study was conducted in accordance with the Declaration of Helsinki (as revised in 2013).

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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