Skip to main content
Download PDF

Comparing EQ-5D-5L and IPOS among residents with malignant tumors in a community home hospice: a longitudinal study

BMC Palliative Care volume 24, Article number: 134 (2025) Cite this article

Abstract

Background

In community home hospices, limited medical staff and high workloads necessitate measurement models that objectively and effectively capture the needs of residents with malignant tumors. This study compares the measurement properties and feasibility of the EuroQol 5-Dimension 5-level (EQ-5D-5L) and Integrated Palliative care Outcome Scale (IPOS), primarily used in palliative care, as only few studies have compared their measurement properties and feasibility based on their actual application in home hospice care.

Methods

Two-wave longitudinal data were collected from 2021 to 2023 at a community home hospice in Japan from a sample of 120 residents diagnosed with malignant tumors. Residents completed both the EQ-5D-5L and IPOS upon admission. Data were collected at three main time points: the initial admission date, one week after admission, and when residents’ conditions changed. This study evaluates the feasibility and measurement properties of EQ-5D-5L and IPOS, including ceiling and floor effects, correlations among domains, and responsiveness.

Results

The EQ-5D-5L demonstrated high feasibility, whereas the IPOS had moderate feasibility with a higher missing data rate. Both scales had low ceiling and floor effects. The EQ-5D-5L showed low responsiveness, while the IPOS showed moderate responsiveness. Anxiety and the emotional domains of the IPOS or EQ-5D-5L scores were insignificantly correlated. Participants who did not complete the IPOS had significantly lower EQ-5D-5L scores.

Conclusions

The EQ-5D-5L may be slightly more suitable for the primary screening of needs in this setting owing to its higher feasibility. In contrast, the IPOS is an excellent tool when it is important to comprehensively and deeply capture the needs of individuals over time. We note that when selecting or using different measures, one must consider the specific characteristics of each measure.

Peer Review reports

Background

Palliative care is considered essential in healthcare, especially with an aging population and increased chronic diseases and malignant tumors [1, 2]. According to the World Health Organization (WHO), the global population aged 60 and over will reach 2.1 billion by 2050, highlighting the growing need for person-centered palliative care in community settings [3].

Community-home hospices play a critical role in ensuring that residents in their final stages of life can live with compassion and dignity in familiar environments [4, 5]. In Japan, these facilities provide person-centered nursing and caregiving for older individuals with terminal-stage cancer or intractable diseases, integrating medical care and support to create a comfortable, home-like environment. Evidently, community-based palliative care interventions address the complex needs of residents with advanced diseases, such as terminal malignancies, while maintaining their quality of life (QoL) [6, 7]. These interventions also help reduce hospital stays and emergency room visits [8, 9], enhance cost-effectiveness [10, 11], and increase the likelihood of residents spending their end of life at home [12].

Collecting information directly from residents is essential to understanding their needs and providing person-centered care. Accordingly, effective methods for obtaining this information are being actively explored [13]. International guidelines, such as those from the European Association for Palliative Care, recommend incorporating patient-reported outcome measures to assess and improve the quality of palliative care [14]. The EuroQol 5-Dimension 5-Level (EQ-5D-5L) [15] and the Integrated Palliative Care Outcome Scale (IPOS) [16, 17] are key tools in palliative care. The EQ-5D-5L is widely used in health economic evaluations and provides a quantifiable measure of QoL [15]. In contrast, the IPOS was explicitly developed to address physical, psychological, social, and spiritual dimensions unique to palliative care patients, aiming to detect symptoms and improve care quality based on evaluation [16, 17]. Understanding the characteristics of these tools to detect symptoms, change measurement, and improve care quality is essential for selecting appropriate evaluation instruments.

The EQ-5D-5L is an internationally recognized standard tool for assessing health-related QoL (HRQoL) across various healthcare settings, including palliative care [18,19,20]. It quantifies HRQoL by evaluating five dimensions: mobility (MO), self-care (SC), usual activities (UA), pain/discomfort (PD), and anxiety/depression (AD). Despite its simplicity, reliability, and validity, its ability to capture the complex needs of palliative care residents has been debated [15, 21]. Conversely, the IPOS is recognized as an international scale for evaluating factors specific to palliative care, including physical symptoms, emotional well-being, and spiritual concerns [22,23,24,25]. However, few studies have compared the measurement properties and feasibility of IPOS and EQ-5D-5L based on their actual application in home hospice care.

In community-home hospices, efficient and practical quality-of-care evaluations are required to respond promptly to changes in residents’ conditions, provide palliative medical care, and offer comprehensive family support, all within the constraints of limited staff resources [26,27,28]. Furthermore, the relationship between the measurement items of these two scales remains insufficiently understood. Therefore, this study compares the measurement properties and feasibility of EQ-5D-5L and IPOS among residents with terminal-stage malignancies in community-home hospices. Specifically, it evaluates how these tools enable symptom detection and monitoring changes, aiming to guide the selection of appropriate evaluation instruments for specific purposes based on their measurement properties.

This study is significant in that it empirically examines the measurement properties of the EQ-5D-5L and IPOS within the same population of residents with terminal-stage malignancies in community-home hospices. Although the two instruments were developed for different purposes, they are often used together in clinical practice. In resource-constrained settings, selecting appropriate tools to assess patients’ conditions and needs requires comprehensive understanding of the dimensions captured by each instrument, their responsiveness, and ease of administration. Rather than determining which tool is superior, this study aims to provide a foundation for interpreting and utilizing the resulting data more practically and contextually appropriately. The findings are expected to improve the quality of palliative care practice and related research.

Methods

This two-wave longitudinal study compares the measurement properties of two widely used assessment tools, the EQ-5D-5L and IPOS. The study was conducted at a community-home hospice in Japan from November 2021 to December 2023, with data collected in a real-world practice setting.

Participants

The participants included all residents of the home hospice during the study period. The inclusion criteria were: (1) residents admitted between November 2021 and December 2023, and (2) residents with at least one EQ-5D-5L or IPOS data point at admission. Participants were excluded if staff deemed them unfit for the study owing to dementia or mental illness that impaired communication.

Facility nurses and caregivers collected data. To ensure data accuracy, researchers conducted an orientation covering the study’s objectives, procedures, and evaluation scales. Physical paper-based questionnaires were used, and residents completed them independently whenever possible. When residents faced difficulties, staff conducted interviews to record their responses. The surveys were conducted as part of daily practice and communication by the staff, who determined the environment, administration order, and other conditions to suit the residents’ needs.

Initial data and baseline information were collected at admission. The first follow-up was conducted one week after admission using the IPOS manual, during which EQ-5D-5L data were collected simultaneously. Subsequent data collection (after the second follow-up) was performed when facility staff had deduced that residents had undergone physical or mental condition changes. These changes included, for example, a decline in activity levels owing to disease progression or noticeable emotional changes.

Outcome measures

The residents’ HRQoL was evaluated using the EQ-5D-5L. EQ-5D-5L comprises five dimensions: mobility (MO), self-care (SC), usual activities (UA), pain/discomfort (PD), and anxiety/depression (AD). Each dimension is rated on a 5-point scale ranging from 1 (no problems) to 5 (extreme problems). Additionally, the EQ-5D-5L allows for the calculation of QoL scores using a country-specific conversion table. In this study, the QoL score for the Japanese setting was calculated using the R package “Eq. 5 d” in R version 4.3.3 [18, 20].

The IPOS is a comprehensive evaluation scale for assessing person-centered outcomes in palliative care and covers six key areas: physical symptoms, anxiety, peace, sharing feelings with loved ones, information, and practical problems. Each item is rated on a 5-point scale ranging from 1 (no problem at all) to 5 (very severe problem), based on the degree of symptoms or emotional burden of the resident. The Japanese version of the IPOS has been developed and validated, and the scale was used in accordance with the manual [23, 29].

Data analysis

The EQ-5D-5L index score was calculated using a conversion table that accounted for Japanese cultural considerations. For the IPOS, total scores for the relevant items were calculated based on the guidelines, and composite scores were calculated for each conceptual domain. Cases with missing data were excluded from the study. Data analysis began with a descriptive analysis of participants’ demographic characteristics. Subsequently, the analyses were conducted in the following order: description of scores, analysis of ceiling and floor effects, analysis of the scales’ responsiveness, and correlation analyses. Following Terwee et al.’s criteria, ceiling and floor effects were determined to be present if 15% or more of the respondents reported the highest or lowest scores [30]. Responsiveness analysis involved comparing baseline and follow-up scores to evaluate the ability of the EQ-5D-5L and IPOS to detect changes over time or in response to clinical interventions. Cohen’s d and Guyatt’s responsiveness index were used to assess responsiveness. Correlation coefficients were calculated to evaluate the relationships between the scores of EQ-5D-5L and IPOS items.

If the results of IPOS or EQ-5D-5L were biased, subgroup analyses were performed based on score ranges. Quantitative data were analyzed using the Kruskal–Wallis and Wilcoxon rank-sum tests, while categorical data were analyzed using the chi-square test. All statistical analyses were performed using R version 4.3.3, with the significance level set at p < 0.05.

Ethics approval

All participants provided written informed consent. The study was approved by the Yokohama City University Life Science and Medical Research Ethics Committee. (reference number F220400048).

Results

Out of the initially recruited 150 individuals, 120 participants (80%) who met the eligibility criteria as residents with malignant tumors were included in the analysis. Table 1 presents the demographic characteristics of the participants.

Table 1 Participant demographics at baseline (n = 120)
Full size table

Table 2 presents EQ-5D-5L baseline and follow-up assessment results. The scale demonstrated a very high response rate across all items, with a maximum missing data rate of 6.25% (AD item at Follow-up 2).

Table 2 Baseline and follow-up assessments of EQ-5D-5L
Full size table

Table 3 presents IPOS baseline and follow-up assessment results. Missing data rates varied across items, with particularly high missing data rates observed at follow-up 2 for “Friends and Family’s Anxiety regarding patient’s condition” and “Sharing Feelings with Family and Friends.” Physical symptoms tended to have lower missing data rates. Most items showed an increase in scores from baseline to follow-up 2.

Table 3 Baseline and Follow-up Assessments of IPOS
Full size table

The ceiling effect of the EQ-5D-5L was relatively low (2.52%), indicating that few residents achieved the highest possible score and that the full range of the scale was appropriately utilized. The floor effect was also low (3.36%), with few residents scoring at the lowest possible level. These findings indicate that the EQ-5D-5L is a useful measure for broadly assessing the health status of residents. Additionally, the analysis of skewness (0.72) and kurtosis (0.20) suggested that the score distribution was close to normal. Particularly, the low kurtosis indicated a relatively flat distribution with few extreme values, suggesting that the EQ-5D-5L may yield consistent results across residents.

In contrast, the IPOS demonstrated slightly higher ceiling (3.36%) and floor (5.04%) effects compared with the EQ-5D-5L. However, these effects remained very low, indicating that there was no substantial skew in the score distribution. The skewness (1.77) and kurtosis (4.21) of the IPOS scores indicated a more skewed distribution than that of the EQ-5D-5L. Particularly, the high kurtosis suggested the presence of extreme values and a distribution concentrated around a specific peak.

Table 4 presents Cohen’s d and Guyatt’s responsiveness values for the scales. The EQ-5D-5L showed low responsiveness, which turned negative at follow-up 2. These results suggest that the EQ-5D-5L has limited ability to capture changes in residents’ health status over the follow-up period. In contrast, the IPOS showed significantly increased Cohen’s d and Guyatt’s responsiveness values at follow-up 2, suggesting that the IPOS may be more sensitive in detecting changes in residents’ symptoms over time.

Table 4 Responsiveness of EQ-5D-5L and IPOS
Full size table

Table 4 presents Cohen’s d and Guyatt’s responsiveness values. The EQ-5D-5L showed low responsiveness at follow-up 2, with negative values recorded. In contrast, the IPOS showed increased Cohen’s d and Guyatt’s responsiveness values at follow-up 2.

Table 5 presents the correlational analysis results of the domains in the EQ-5D-5L and IPOS, which indicate generally high correlations between the domains. Particularly, the five EQ-5D-5L domains showed moderate to high correlations with the IPOS domains “Physical Symptoms” and “Practical Problems.”

Table 5 Correlation analysis of individual domains between IPOS and EQ-5D − 5L
Full size table

In contrast, the IPOS domains “Anxiety” and “Sharing Feelings with Family and Friends” were not sufficiently correlated with the EQ-5D-5L domains. Notably, the IPOS “Anxiety” domain showed a high correlation with other IPOS domains, such as “Physical Symptoms” (0.6047; p < 0.01), suggesting that the IPOS may be more effective in evaluating information related to residents’ anxiety, concerns, and the sense of reassurance provided by sufficient explanations from healthcare professionals.

Table 6 presents information of participants’ completion of the IPOS at baseline. Seventy-one participants (59.2%) completed the baseline IPOS measurements, while 49 participants (40.8%) had missing responses in at least one item. The demographic characteristics and QoL were compared between the two groups.

Table 6 Baseline Characteristics of Participants: Completed vs. Not Completed IPOS
Full size table

The Mann–Whitney U test revealed insignificant differences between the two groups in age, length of stay, sex distribution, or cancer’s primary site. The median age for the non-completion group (75 years, range 55–92) was slightly lower than that of the completion group (79 years, range 57–97); however, this difference was statistically insignificant (p = 0.0734). Similarly, no significant differences were observed in the length of stay (p = 0.1562) or the distribution of the cancer’s primary site (p = 0.3181–0.8646).

However, participants who did not complete the IPOS had significantly lower EQ-5D-5L index scores (median 0.2450, range −0.026 to 0.748) than their counterparts (median 0.3300, range −0.026 to 1.0; p = 0.0130). Although this is a slight difference, it suggests that participants with poorer health status may be less likely to complete the IPOS.

Discussion

This study explores the use of the EQ-5D-5L and IPOS in the home hospice setting, evaluating their feasibility and measurement properties, including ceiling and floor effects, responsiveness, and correlations between the individual domains of each scale. To our knowledge, this is the first study to compare the measurement properties of the EQ-5D-5L and IPOS in a Japanese home hospice setting.

Feasibility

The analysis in this study reveals that the EQ-5D-5L had very few missing data points, with only 1 − 2% missing data at any time point from baseline through all follow-ups, demonstrating its high reliability as a measurement tool [31, 32]. This finding is consistent with those of previous studies that showed that the EQ-5D-5L has excellent feasibility across various resident populations [33]. Previous studies highlight that a small number of items allows for rapid assessment, and the simplicity and clarity of the questions facilitate quick and accurate responses [34]. Additionally, the use of a five-point scale for assessing QoL may reflect residents’ HRQoL more accurately [34]. This suggests that the small number of items helps minimize the burden on terminally ill residents who may be experiencing significant physical and psychological distress, making it a highly feasible measurement tool in such settings. Considering that home hospice residents with malignant tumors may have limited time and physical strength owing to advanced disease and end-of-life symptoms such as pain and nausea, the high feasibility of the EQ-5D-5L observed in this study indicates this scale’s appropriateness for evaluating HRQoL in this setting [35].

The IPOS is also a reliable and valid tool with cross-cultural adaptation and translation into multiple languages [36,37,38,39,40,41,42], and the scale is validated in various settings [43,44,45,46]. However, the analysis in this study shows that items related to psychological and emotional factors, particularly those concerning anxiety and empathy, had high missing data rates (maximum 32% for an individual item). Several reasons could explain this, including the possibility that the IPOS items require residents to recall their care experiences and reassess their interactions with other people, making it difficult for them to answer immediately [39].

Previous cross-cultural adaptation studies indicate that residents may not immediately comprehend the content of IPOS questions [39]. Furthermore, it has been reported that completing the survey can take between 7.7 and 11.24 min [39]. Notably, previous surveys that introduced IPOS assessments into medical facilities showed that the completion rate of the IPOS was between 15.4% and 37.2%, with an IPOS utilization rate of approximately 41.4% among residents [47]. In community home hospices, where nursing and caregiving staff numbers may be more limited than in acute care facilities, utilizing a 19-item scale, such as the IPOS, which includes free-text fields, could pose practical challenges. Additionally, previous studies point out discrepancies between healthcare providers and residents in IPOS assessments, which could affect the reliability of the evaluation results when resident and healthcare provider assessments are contradictory [47].

In this study, the EQ-5D-5L scores of participants who did not complete the IPOS assessment were significantly lower, suggesting that these participants might tend to have a poorer health status, potentially influencing missing data. This implies that the IPOS may not accurately capture the conditions of particularly ill residents [48]. A study in China reported that the general population’s mean EQ-5D-5L index score was 0.83 and 0.79 among individuals at the early stages of malignant tumor diagnosis [49]. In comparison, the mean score of participants unable to complete the IPOS assessment in this study was 0.24, suggesting that they likely had a much higher severity level in their health conditions.

This finding indicates that completing the full IPOS may be difficult for patients with higher levels of severity. Nonetheless, the IPOS is not entirely dependent on full self-reporting; even when direct responses from patients are complex, healthcare professionals can utilize the IPOS as a complementary framework for assessment. These characteristics indicate that the IPOS is a reliable and flexible instrument for conducting comprehensive and practical needs assessments in palliative care settings.

Responsiveness

The EQ-5D-5L showed only slight responsiveness, with minimal changes observed during the follow-up period. This suggests that the EQ-5D-5L may not have adequately captured significant health status changes in the terminal-stage population residing in home hospices. Previous studies report that compared with other scales, the EQ-5D-5L does not demonstrate superior sensitivity to changes [50], but has shown adequate responsiveness in other settings [51, 52], causing ongoing debates about its responsiveness. This study compares data between admission and one week after, following the same timing as the IPOS measurements. However, the limited measurement period might have contributed to the lack of sensitivity in the EQ-5D-5L. Similarly, the validity of reevaluating the IPOS within one week has also been debated [39].

In this context, although the EQ-5D-5L and IPOS were administered simultaneously, the EQ-5D-5L, which evaluates physical functioning and limitations in daily activities, may have been less sensitive to changes over the short one-week observation. The EQ-5D-5L assesses aspects such as physical function and activity restrictions that are relatively objective and less subject to rapid fluctuation, making it more suitable for long-term follow-up rather than detecting short-term changes. In contrast, the IPOS targets more subjective and potentially variable elements, such as psychological and emotional aspects (e.g., anxiety and worries), as well as physical symptoms, which may be more responsive to short-term fluctuations. Additionally, the IPOS recommends reassessment when needed, allowing greater flexibility in capturing changes over shorter periods. Other reports indicate that while the IPOS is sensitive to detecting changes, the average completion rate for questionnaires is only 58%, with at least 14% of respondents reporting resistance to weekly evaluations [49], highlighting the importance of designing feasible measurement intervals.

The IPOS showed small effect sizes at the initial follow-up, but small to moderate effect sizes at the subsequent follow-up, suggesting that it may be more sensitive to the gradual worsening of symptoms in the terminal-stage population. This may be because the IPOS accurately captures the scores of 10 items related to physical symptoms [53] and additional mental aspects, such as empathy and worries, that are not covered by the EQ-5D-5L, providing a broader understanding of hospice residents’ conditions [24]. Considering that residents with malignant tumors tend to experience gradual deterioration in their condition, it is crucial to accurately capture these changes to implement appropriate symptom management and care approaches.

Correlation analysis

Correlation analysis between individual domains of the EQ-5D-5L and the IPOS revealed significant correlations across many items, indicating general conceptual consistency between the two scales. Particularly, strong correlations were observed between the EQ-5D-5L concepts related to physical health and the IPOS evaluation of physical symptoms.

However, the IPOS domains on “anxiety” and “sharing feelings with family and friends” had low correlations with the EQ-5D-5L domains, suggesting that these psychological and emotional concepts are distinctive and not shared with the EQ-5D-5L. Residents with malignant tumors have been reported to experience worsening physical symptoms, anxiety, difficulties in daily life, and social isolation during the terminal stages [54, 55]. Specifically, the “anxiety/depression” item in the EQ-5D-5L assesses the severity of anxiety and depression using a simple five-level scale with content that is relatively general and abstract. In contrast, the IPOS item related to “feeling anxious” captures more concrete and multifaceted aspects, such as concerns about illness and treatment, relationships with family and friends, and low mood. Therefore, the IPOS may capture more nuanced and broader aspects of anxiety that are specific to palliative care, which could explain the lack of significant correlation between the two scales. Furthermore, the IPOS enables healthcare professionals to supplement their observational perspectives and effectively monitor patients’ symptoms [56]. It also facilitates communication and information sharing within care teams, supporting the consistent delivery of care that aligns with patients’ needs [56]. Particularly, in response to the rapid symptom changes observed during the terminal phase, the IPOS helps develop comprehensive care plans that address physical as well as psychological and social aspects.

Implications for regional practice and future research

The EQ-5D-5L, with its high feasibility and broad applicability, is considered a useful tool for assessing general HRQoL. It may be particularly efficient and feasible when residents’ symptoms are stable. In contrast, the IPOS, with its sensitivity to psychological and emotional factors, is expected to be particularly useful in environments that focus on palliative care and mental health. However, the feasibility of using the IPOS poses challenges. It is suggested that clinical judgment and strategic use of both tools, employing the EQ-5D-5L when symptoms are stable and the IPOS for more detailed assessments of psychological and emotional changes, may be necessary. Additionally, it is important to consider socioeconomic factors such as financial burden and regional disparities in access to healthcare resources when selecting and applying these tools appropriately [57].

Future research should include longitudinal validation with larger sample sizes. Further, the development and validation of new practical and effective scales would advance the field.

Limitations of the study

This study has some limitations. First, the sample size was relatively small, requiring caution when generalizing the results. Future studies should target larger and more diverse populations. Additionally, this study was conducted in a single-home hospice facility, limiting its applicability to other settings and populations.

Moreover, this study exclusively examines cancer patients, which may affect the generalizability of the findings. Typically, the progression and needs of cancer patients differ from those of residents with other conditions, such as neurological diseases. Therefore, analyses tailored to the specific characteristics of different diseases may be necessary.

Additionally, the study environment may have influenced the results owing to decisions and actions of on-site staff. For example, the study design did not specify which scale (EQ-5D-5L or IPOS) should be administered first. This flexibility might have affected the order and process of responses, potentially introducing factors such as fatigue or reduced concentration during the assessments. This flexibility might have affected the order and process of responses, potentially introducing factors such as fatigue or reduced concentration during the assessments. These effects could be particularly relevant to the completion rates and accuracy of responses for the IPOS, which includes a more significant number of items. Future studies should consider implementing standardized measurement procedures and controlled environments to mitigate these potential biases.

Additionally, the measurement intervals for the scales in this study were set at one week and at times of clinical change, based on the IPOS manual and previous literature regarding recommended measurement frequency. Consequently, the EQ-5D-5L was also administered according to this schedule. This may have influenced the evaluation of the EQ-5D-5L’s responsiveness, as it primarily captures functional aspects of health status. These findings suggest that future studies should consider setting measurement intervals that align with the characteristics of each scale to assess responsiveness more accurately. However, considering the need for cooperation from the facilities, time, and psychological considerations regarding the residents involved, this study is considered a relatively substantial investigation in hospice research.

Conclusion

The EQ-5D-5L may be slightly more suitable for primary screening needs in community home hospices owing to its higher feasibility. In contrast, the IPOS is an excellent tool when it is important to comprehensively and deeply capture the needs of individuals over time. This study suggests that it is necessary to consider the specific characteristics of each measure when selecting or using different measures.

Data availability

The dataset utilized and analyzed during the current study is available from the corresponding author upon reasonable request.

Abbreviations

EQ-5D-5L:

EuroQol 5-Dimension 5-level

HRQoL:

Health-related QoL

IPOS:

Integrated Palliative care Outcome Scale

QoL:

Quality of life

References

  1. Morin L, Aubry R, Frova L, MacLeod R, Wilson DM, Loucka M, et al. Estimating the need for palliative care at the population level: A cross-national study in 12 countries. Palliat Med. 2017;6:526–36.

    Article  Google Scholar 

  2. Delamere T, Balfe J, Fraser LK, Sheaf G, Smith S. Defining and quantifying population-level need for children’s palliative care: findings from a rapid scoping review. BMC Palliat Care. 2024;23:212.

    Article  PubMed  PubMed Central  Google Scholar 

  3. World Health Organization: Palliative care. https://www.who.int/health-topics/palliative-care. Accessed 27 August 2024.

  4. Feliciano DR, Reis-Pina P. Enhancing end-of-life care with home-based palliative interventions: A systematic review. J Pain Symptom Manag. 2024;68:e356–72.

    Article  Google Scholar 

  5. Evans CJ, Bone AE, Yi D, Gao W, Morgan M, Taherzadeh S, et al. Community-based short-term integrated palliative and supportive care reduces symptom distress for older people with chronic noncancer conditions compared with usual care: A randomised controlled single-blind mixed method trial. Int J Nurs Stud. 2021;120:103978.

    Article  PubMed  Google Scholar 

  6. Patel D, Patel P, Ramani M, Makadia K. Exploring perception of terminally ill cancer patients about the quality of life in hospice based and home based palliative care: A mixed method study. Indian J Palliat Care. 2023;29:57–63.

    Article  PubMed  PubMed Central  Google Scholar 

  7. Brännström M, Boman K. Effects of person-centred and integrated chronic heart failure and palliative home care. PREFER: a randomized controlled study. Eur J Heart Fail. 2014;16:1142-51.

  8. Seow H, Brazil K, Sussman J, Pereira J, Marshall D, Austin PC, et al. Impact of community based, specialist palliative care teams on hospitalisations and emergency department visits late in life and hospital deaths: a pooled analysis. BMJ. 2014:348.

  9. Bergqvist J, Ljunggren G. The impact of integrated home palliative care services on resource use and place of death. J Palliat Med. 2020;23:67–73.

    Article  PubMed  Google Scholar 

  10. Wong FKY, So C, Ng AYM, Lam PT, Ng JSC, Ng NHY, et al. Cost-effectiveness of a transitional home-based palliative care program for patients with end-stage heart failure. Palliat Med. 2018;32:476–84.

    Article  PubMed  Google Scholar 

  11. Maetens A, Beernaert K, De Schreye R, Faes K, Annemans L, Pardon K, et al. Impact of palliative home care support on the quality and costs of care at the end of life: a population-level matched cohort study. BMJ Open. 2019;9:e025180.

    Article  PubMed  PubMed Central  Google Scholar 

  12. Riolfi M, Buja A, Zanardo C, Marangon CF, Manno P, Baldo V. Effectiveness of palliative home-care services in reducing hospital admissions and determinants of hospitalization for terminally ill patients followed up by a palliative home-care team: a retrospective cohort study. Palliat Med. 2014;28:403–11.

    Article  PubMed  Google Scholar 

  13. Consolo L, Colombo S, Basile I, Rusconi D, Campa T, Caraceni A, et al. Barriers and facilitators of electronic patient-reported outcome measures (e-PROMs) for patients in home palliative cancer care: a qualitative study of healthcare professionals’ perceptions. BMC Palliat Care. 2023;22:111.

    Article  PubMed  PubMed Central  Google Scholar 

  14. European Association for Palliative Care (EAPC). Outcome measures in palliative care: using patient reported outcome measures (PROMs) to improve care. 2015. https://pos-pal.org/doc15/PROMS_booklet_FINAL_15102015_compressed.pdf.

  15. Wichmann AB, Goltstein LCMJ, Obihara NJ, Berendsen MR, Van Houdenhoven M, Morrison RS, et al. QALY-time: experts’ view on the use of the quality-adjusted life year in cost-effectiveness analysis in palliative care. BMC Health Serv Res. 2020;20:659.

    Article  PubMed  PubMed Central  Google Scholar 

  16. Murtagh FE, Ramsenthaler C, Firth A, Groeneveld EI, Lovell N, Simon ST, et al. A brief, patient- and proxy-reported outcome measure in advanced illness: validity, reliability and responsiveness of the Integrated Palliative care Outcome Scale (IPOS). Palliat Med. 2019;33:1045–57.

    Article  PubMed  PubMed Central  Google Scholar 

  17. Högberg C, Alvariza A, Beck I. Patients’ experiences of using the Integrated Palliative care Outcome Scale for a person-centered care: a qualitative study in the specialized palliative home-care context. Nurs Inq. 2019;26:e12297.

    Article  PubMed  Google Scholar 

  18. Brooks R. EuroQol: the current state of play. Health Policy. 1996;37:53–72.

    Article  PubMed  CAS  Google Scholar 

  19. Kennedy-Martin M, Slaap B, Herdman M, van Reenen M, Kennedy-Martin T, Greiner W, et al. Which multi-attribute utility instruments are recommended for use in cost-utility analysis? A review of national health technology assessment (HTA) guidelines. Eur J Health Econ. 2020;21:1245–57.

    Article  PubMed  PubMed Central  Google Scholar 

  20. Ikeda S, Shiroiwa T, Igarashi A, Noto S, Fukuda T, Saito S, et al. Developing a Japanese version of the EQ-5D-5L value set. Hoken Iryo Kagaku. 2015;64:47–55.

    Google Scholar 

  21. Wichmann AB, Adang EM, Stalmeier PF, Kristanti S, Van den Block L, Vernooij-Dassen MJ, et al. The use of quality-adjusted life years in cost-effectiveness analyses in palliative care: mapping the debate through an integrative review. Palliat Med. 2017;31:306–22.

    Article  PubMed  PubMed Central  Google Scholar 

  22. Schildmann EK, Groeneveld EI, Denzel J, Brown A, Bernhardt F, Bailey K, et al. Discovering the hidden benefits of cognitive interviewing in two languages: the first phase of a validation study of the Integrated Palliative care Outcome Scale. Palliat Med. 2016;30:599–610.

    Article  PubMed  Google Scholar 

  23. Sakurai H, Miyashita M, Imai K, Miyamoto S, Otani H, Oishi A, et al. Validation of the Integrated Palliative care Outcome Scale (IPOS) – Japanese version. Jpn J Clin Oncol. 2019;49:257–62.

    Article  PubMed  Google Scholar 

  24. Hocaoglu MB, Hepgul N, Tunnard I, Meltem E, Efe H, Ataoglu B, et al. Towards patient-centred cancer care: cross-cultural validity and responsiveness of the Turkish Integrated Palliative care Outcome Scale. Health Qual Life Outcomes. 2020;18:312.

    Article  PubMed  PubMed Central  Google Scholar 

  25. Park SJ, Park Y, Han M, Kim SH, Hwang IC, Woo GU, et al. Validity and reliability of the integrated palliative care outcome scale (IPOS) in Korea: a multicenter study of terminally ill cancer patients. BMC Palliat Care. 2024;23:298.

    Article  PubMed  PubMed Central  Google Scholar 

  26. Lehto RH, Heeter C, Forman J, Shanafelt T, Kamal A, Miller P, et al. Hospice employees’ perceptions of their work environment: a focus group perspective. Int J Environ Res Public Health. 2020;17:6147.

    Article  PubMed  PubMed Central  Google Scholar 

  27. Fattori A, Pedruzzi M, Cantarella C, Bonzini M. The burden in palliative care assistance: A comparison of psychosocial risks and burnout between inpatient hospice and home care services workers. Palliat Support Care. 2023;21:49–56.

    Article  PubMed  Google Scholar 

  28. Dijxhoorn AQ, Brom L, van der Linden YM, Leget C, Raijmakers NJ. Healthcare Professionals’ Work-Related Stress in Palliative Care: A Cross-Sectional Survey. J Pain Symptom Manage. 2021;62:e38–45.

    Article  PubMed  Google Scholar 

  29. Miyashita M. Integrated Palliative Care Outcome Scale: IPOS (Japanese version) User Manual Ver 0.51. Accessed 27 August 2024.

  30. Terwee CB, Bot SDM, de Boer MR, van der Windt DAWM, Knol DL, Dekker J, et al. Quality criteria were proposed for measurement properties of health status questionnaires. J Clin Epidemiol. 2007;60:34–42.

    Article  PubMed  Google Scholar 

  31. Snowdon DA, Collyer TA, Marsh L, Srikanth V, Beare R, Baber S, et al. Healthcare consumer acceptability of routine use of the EQ-5D-5L in clinical care: a cross-sectional survey. Qual Life Res. 2024;33:1307–21.

    Article  PubMed  PubMed Central  Google Scholar 

  32. Khadka J, Milte R, Hutchinson C, Cleland J, Ratcliffe J. Reliability of the quality of life-aged care consumers (QOL-ACC) and EQ-5D-5L among older people using aged care services at home. Health Qual Life Outcomes. 2024;22:40.

    Article  PubMed  PubMed Central  Google Scholar 

  33. Marten O, Brand L, Greiner W. Feasibility of the EQ-5D in the elderly population: a systematic review of the literature. Qual Life Res. 2022;31:1621–37.

    Article  PubMed  Google Scholar 

  34. Snowdon DA, Srikanth V, Beare R, Noeske KE, Le E, O’Bree B, et al. Acceptability of the routine use and collection of a generic patient reported outcome measure from the perspective of healthcare staff: a qualitative study. J Patient Rep Outcomes. 2023;7:81.

    Article  PubMed  PubMed Central  Google Scholar 

  35. Tatum PE, Mills SS. Hospice and palliative care: an overview. Med Clin North Am. 2020;104:359–73.

    Article  PubMed  Google Scholar 

  36. Laissaar M, Hallik R, Sillaste P, Ragun U, Pärn ML, Suija K. Translation and cultural adaptation of IPOS (Integrated Palliative care Outcome Scale) in Estonia. J Patient Rep Outcomes. 2021;5:15.

    Article  PubMed  PubMed Central  Google Scholar 

  37. Szeliga M, Kotlińska-Lemieszek A, Jagielski P, Jaroszewski W, Kuźmicz I, Stachnik K, et al. Psychometric validation and cross-cultural adaptation of the Integrated Palliative care Outcome Scale in Polish (IPOS-Pol). Palliat Support Care. 2022;20:687–93.

    PubMed  Google Scholar 

  38. Long VJE, Cheung YB, Qu D, Lim K, Lee G, Yee ACP, et al. Validity and reliability of the English and translated Chinese versions of the Integrated Palliative care Outcome Scale (IPOS) in Singapore. BMC Palliat Care. 2021;20:40.

    Article  PubMed  PubMed Central  Google Scholar 

  39. Anagnostou D, Katsaragakis S, Panagiotou I, Patiraki E, Tserkezoglou A. Translation and cultural adaptation of the Greek Integrated Palliative care Outcome Scale (IPOS): challenges in a six-phase process. BMC Palliat Care. 2023;22:168.

    Article  PubMed  PubMed Central  Google Scholar 

  40. Vlckova K, Hoschlova E, Chroustova E, Loucka M. Psychometric properties of the Czech Integrated Palliative Outcome Scale: reliability and content validity analysis. BMC Palliat Care. 2020;19:39.

    Article  PubMed  PubMed Central  Google Scholar 

  41. Antunes B, Ferreira PL. Validation and cultural adaptation of the Integrated Palliative care Outcome Scale (IPOS) for the Portuguese population. BMC Palliat Care. 2020;19:178.

    Article  PubMed  PubMed Central  Google Scholar 

  42. Veronese S, Rabitti E, Costantini M, Valle A, Higginson I. Translation and cognitive testing of the Italian Integrated Palliative Outcome Scale (IPOS) among patients and healthcare professionals. PLoS ONE. 2019;14:e0208536.

    Article  PubMed  PubMed Central  CAS  Google Scholar 

  43. Georgiopoulos AM, DiFiglia S, Seng EK, Portenoy R, Chaudhary N, Wei R, et al. Validation of the Integrated Palliative Care Outcome Scale (IPOS) in adults with cystic fibrosis. Pediatr Pulmonol. 2024;59:2857–66.

    Article  PubMed  Google Scholar 

  44. Martinsson L, Sahlén KG. Translation and cultural adaptation of the Integrated Palliative care Outcome Scale for Dementia (IPOS-Dem) to Swedish. BMC Nurs. 2022;21:78.

    Article  PubMed  PubMed Central  Google Scholar 

  45. Roch C, Palzer J, Zetzl T, Störk S, Frantz S, van Oorschot B. Utility of the Integrated Palliative Care Outcome Scale (IPOS): a cross-sectional study in hospitalised patients with heart failure. Eur J Cardiovasc Nurs. 2020;19:702–10.

    Article  PubMed  Google Scholar 

  46. Neo SHS, Tan JYT, Sim DKL, Ng ESL, Loh JKX, Yang GM, et al. Validity and reliability of the Integrated Palliative Care Outcome Scale in Asian heart failure patients. Palliat Med Rep. 2022;3:287–95.

    Article  PubMed  PubMed Central  Google Scholar 

  47. Jara T, Ryan R. Optimising palliative care assessment: a quality improvement project on IPOS integration during hospice admissions. BMJ Support Palliat Care. 2024;14:17.

    Google Scholar 

  48. Yang GM, Lee Y, Ke Y, Neo PSH, Cheung YB. Feasibility of weekly Integrated Palliative Care Outcome Scale (IPOS) within a stepped care model. J Pain Symptom Manag. 2024;68:e174–82.

    Article  Google Scholar 

  49. Xu RH, Wong EL, Jin J, Huang H, Dong D. Health-related quality of life measured using EQ-5D in patients with lymphomas. Support Care Cancer. 2021;29(5):2549–60. https://doiorg.publicaciones.saludcastillayleon.es/10.1007/s00520-020-05774-6. (Epub 2020 Sep 19 PMID: 32949297).

    Article  PubMed  Google Scholar 

  50. Whitehurst DGT, Mah C, Krebs E, Enns B, Socias ME, Jutras-Aswad D, et al. Sensitivity to change of generic preference-based instruments (EQ-5D-3L, EQ-5D-5L, and HUI3) in the context of treatment for people with prescription-type opioid use disorder in Canada. Qual Life Res. 2023;32:2209–21.

    Article  PubMed  PubMed Central  Google Scholar 

  51. Sandin K, Shields G, Gjengedal RGH, Osnes K, Bjørndal MT, Reme SE, et al. Responsiveness to change in health status of the EQ-5D in patients treated for depression and anxiety. Health Qual Life Outcomes. 2023;21:35.

    Article  PubMed  PubMed Central  Google Scholar 

  52. Hu X, Jing M, Zhang M, Yang P, Yan X. Responsiveness and minimal clinically important difference of the EQ-5D-5L in cervical intraepithelial neoplasia: a longitudinal study. Health Qual Life Outcomes. 2020;18:324.

    Article  PubMed  PubMed Central  Google Scholar 

  53. Nakajima N. Palliative Care Outcome Scale assessment for cancer patients eligible for palliative care: perspectives on the relationship between patient-reported outcome and objective assessments. Curr Oncol. 2022;29:7140–7.

    Article  PubMed  PubMed Central  Google Scholar 

  54. Podbury B, Gurgenci T, Huggett G, Greer R, Hardy J, Good P. Psychological distress and physical symptoms in advanced cancer: cross-sectional study. BMJ Support Palliat Care. 2024.

  55. Tang M, Su Z, He Y, Pang Y, Zhou Y, Wang Y, et al. Physical symptoms and anxiety and depression in older patients with advanced cancer in China: a network analysis. BMC Geriatr. 2024;24:185.

    Article  PubMed  PubMed Central  Google Scholar 

  56. de Wolf-Linder S, Kramer I, Reisinger M, Murtagh FEM, Schubert M, Ramsenthaler C. Empowering informal caregivers and nurses to take a person-centred view: adaptation and clinical utility of the Integrated Palliative Outcome Scale (IPOS-Dem) for use in acute and community care settings. BMC Geriatr. 2024;21(24):1030.

    Article  Google Scholar 

  57. Xu RH, Wang LL, Zhou LM, Wong EL, Wang D. Urban-rural differences in financial toxicity and its effect on cancer survivors’ health-related quality of life and emotional status: a latent class analysis. Support Care Cancer. 2022;30(5):4219–29. https://doiorg.publicaciones.saludcastillayleon.es/10.1007/s00520-021-06762-0. (Epub 2022 Jan 27 PMID: 35083540).

    Article  PubMed  Google Scholar 

Download references

Acknowledgements

Our sincere appreciation goes to the staff of Japan Hospice Holdings Inc., patients, and all participants for their cooperation and contributions, which were essential to the success of this study.

Funding

This work was supported by A company. The funder was not involved in the study design, data collection, analysis, interpretation of data, or the decision to submit the manuscript for publication.

Author information

Authors and Affiliations

  1. Department of Health Data Science, Yokohama City University, 22-2 Seto, Kanazawa-ku, Yokohama, Kanagawa, 236-0027, Japan

    Takeshi Miura, Masato Kaneko & Makoto Kuroki

  2. Nursing Course, School of Medicine, Yokohama City University, 3-9 Fukuura, Kanazawa-ku, Yokohama, Kanagawa, 236-0004, Japan

    Takeshi Miura, Kei Kawano & Yuka Kanoya

  3. Department of Medical Education, Yokohama City University, 3-9 Fukuura, Kanazawa-ku, Yokohama, Kanagawa, 236-0004, Japan

    Kei Kawano

Authors
  1. Takeshi Miura
    View author publications

    You can also search for this author inPubMed Google Scholar

  2. Masato Kaneko
    View author publications

    You can also search for this author inPubMed Google Scholar

  3. Kei Kawano
    View author publications

    You can also search for this author inPubMed Google Scholar

  4. Yuka Kanoya
    View author publications

    You can also search for this author inPubMed Google Scholar

  5. Makoto Kuroki
    View author publications

    You can also search for this author inPubMed Google Scholar

Contributions

TM, MK, KK, and YK contributed to the study’s concept, design, and data collection. TM, MK, and MK handled data analysis, interpretation, and manuscript drafting. All authors approved the final version and accept public responsibility for their contributions.

Corresponding author

Correspondence to Takeshi Miura.

Ethics declarations

Ethics approval and consent to participate

The study protocol was reviewed and approved by the"Ethics Committee for Life Science and Medical Research Involving Human Subjects"at Yokohama City University (YCU). This study was conducted in accordance with relevant guidelines and regulations, such as the Declaration of Helsinki. Informed consent was obtained from all participants prior to their inclusion in the study.

Yokohama City University (YCU) has established the"Ethics Committee for Life Science and Medical Research Involving Human Subjects"to oversee and ensure that all research involving human participants or human tissue samples complies with relevant ethical guidelines and regulations. This committee reviews research protocols to confirm adherence to national and international standards, including the Declaration of Helsinki and Japan's Ethical Guidelines for Medical and Biological Research Involving Human Subjects.

Consent for publication

Not applicable.

Competing interests

The authors declare no competing interests.

Additional information

Publisher’s Note

Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.

Rights and permissions

Open Access This article is licensed under a Creative Commons Attribution-NonCommercial-NoDerivatives 4.0 International License, which permits any non-commercial use, sharing, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if you modified the licensed material. You do not have permission under this licence to share adapted material derived from this article or parts of it. The images or other third party material in this article are included in the article’s Creative Commons licence, unless indicated otherwise in a credit line to the material. If material is not included in the article’s Creative Commons licence and your intended use is not permitted by statutory regulation or exceeds the permitted use, you will need to obtain permission directly from the copyright holder. To view a copy of this licence, visit http://creativecommons.org/licenses/by-nc-nd/4.0/.

Reprints and permissions

About this article

Check for updates. Verify currency and authenticity via CrossMark

Cite this article

Miura, T., Kaneko, M., Kawano, K. et al. Comparing EQ-5D-5L and IPOS among residents with malignant tumors in a community home hospice: a longitudinal study. BMC Palliat Care 24, 134 (2025). https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-025-01779-2

Download citation

  • Received:

  • Accepted:

  • Published:

  • DOI: https://doiorg.publicaciones.saludcastillayleon.es/10.1186/s12904-025-01779-2

Keywords

BMC Palliative Care

ISSN: 1472-684X

Contact us