Chronic Kidney Disease (CKD) is associated with a high symptom burden. In Brazil, there is no specific instrument to assess symptoms in CKD patients receiving palliative care. The Integrated Palliative Care Outcome Scale Renal (IPOS-Renal) has been translated and validated in 13 languages. To translate, cross-culturally adapt, and validate the IPOS-renal for Brazilian Portuguese. A methodological study conducted in eight phases: conceptual definition, forward translation, back-translation, expert review, cognitive interviews, proofreading, psychometric testing, and final reporting. A total of 153 stage 5 CKD patients were assessed with the IPOS-renal and the Edmonton Symptom Assessment System (ESAS-r) between February and March 2024. Instruments were reapplied after 15 days in 95 patients. The scale demonstrated internal consistency, reliability, temporal stability, and convergent validity with the ESAS-r. The most prevalent symptoms were drowsiness (44%), difficulty walking (44%), fatigue/lack of energy (43%), and pain (36%). Less frequent symptoms included dyspnea (7%), diarrhea (14%), and vomiting (14%). Unbearable symptoms intensity was rare, including emotional symptoms (5%), difficulty sleeping (3%), and fatigue/lack of energy (3%). Symptom intensity varied, being severe for pain (24-25%) and drowsiness (21%); and moderate for difficulty walking (25%) and fatigue/lack of energy (22%). The Brazilian Portuguese version of the IPOS- renal is valid, reliable, and suitable for identifying biopsychosocial symptoms in stage 5 CKD patients receiving palliative care. A Doença Renal Crônica (DRC) está associada a uma elevada carga de sintomas. No Brasil, não há instrumento específico para aferição de sintomas em pacientes com DRC em cuidados paliativos. A Integrated Palliative Care Outcome Scale Renal – (IPOS-Renal) é uma escala já traduzida e validada em treze idiomas. Traduzir, adaptar transculturalmente e validar a IPOS-Renal para o português do Brasil. Estudo metodológico realizado em oito fases: definição conceitual, tradução para o português, retrotradução, revisão por especialistas, entrevistas cognitivas, leitura de prova, testes psicométricos e relatório final. Foram avaliados 153 pacientes com DRC estágio G5, utilizando a IPOS-Renal e o Edmonton Symptom Assessment System (ESAS-r), entre fevereiro e março de 2024, com reaplicação dos instrumentos após quinze dias em 95 pacientes. A escala apresentou consistência interna, confiabilidade, estabilidade temporal e validade convergente com o ESAS-r. Os sintomas mais prevalentes foram sonolência (44%), dificuldade para caminhar (44%), cansaço/falta de energia (43%) e dor (36%). Sintomas menos frequentes incluíram falta de ar (7%), diarreia (14%) e vômitos (14%). A intensidade insuportável foi rara, destacando sintomas emocionais (5%), dificuldade para dormir (3%) e cansaço/falta de energia (3%). A intensidade variou, sendo forte para dor (24–25%) e sonolência (21%), e moderada para dificuldade para caminhar (25%) e cansaço/falta de energia (22%). A versão em português do Brasil do IPOS-Renal é válida, confiável e adequada para identificar sintomas biopsicossociais em pacientes com DRC estágio 5.
BACKGROUND: In order to conduct holistic person-centred assessment, monitoring and research in progressive illness, a valid tool is required that captures the specific symptoms and concerns faced by patients and families. While the Integrated Palliative care Outcome Scale (IPOS) is widely used, its cultural applicability for Chinese populations remains unestablished. METHODS: This psychometric validation study aimed to culturally adapt the IPOS and evaluate its psychometric properties in Chinese-speaking populations. Conducted in oncology and palliative care settings in Hong Kong, the study comprised two phases. Phase I: Traditional Chinese IPOS translation with face/content validity testing through cognitive interviews(7 patients with advanced illness, 6 caregivers, 15 healthcare professionals) and expert panel meeting. Phase II: psychometric testing with 236 patient-caregiver dyads and 21 professionals. Analyses included exploratory/confirmatory factor analyses, convergent validity with Edmonton Symptom Assessment System (ESAS) item pairs, divergent validity with State Hope Scale (SHS), predictive validity with EuroQoL5-dimensional 5-level Scale(EQ-5D-5L)/Palliative Performance Scale-version2(PPSv2), known-group validity, reliability, responsiveness and feasibility. RESULTS: The Modified Traditional Chinese IPOS(MC-IPOS) was formed with swelling of limbs and difficulty in sleeping added, demonstrated high face/content validity. EFA extracted 5 factors with CFA indicating marginally acceptable indices(CFI=.91, RMSEA/SRMR=.06); the 1-factor(scree plot suggested) and theoretical 3-factor solutions exhibited poor fit, leading to further item-level analysis. Convergent validity was established with significant correlations(.35≤ρ≤.79) to ESAS item pairs; divergent validity unconfirmed. Known-group validity was evidenced by significant score differences(total scores and 17/19 item scores) observed between stable and unstable/deteriorating patients. Specific MC-IPOS items can predict corresponding EQ-5D-5L items, while PPSv2 can predict most MC-IPOS items. Internal consistency(α=.86) was good, inter-rater reliability was acceptable(>80% items .2w≤.61 across all dyads/timepoints), and test-retest reliability(70% items kw≥.60) was good. MC-IPOS was responsive in improved group(z=-2.49, p<.001), feasible and acceptable(patient mean completion time 8.39 minutes, 86.9% reported acceptable length). CONCLUSIONS: The MC-IPOS has adequate properties for implementation to improve routine palliative care practice and research among Chinese-speaking populations.
This mixed-method study examined whether the Integrated Palliative Outcome Scale (IPOS) can support the identification of palliative care needs and inform individualized care planning in hospice settings. Thirty-eight terminally ill patients admitted to a hospice in Northern Italy completed the IPOS. Quantitative analyses described the frequency and intensity of physical, psychological, relational, spiritual, and practical needs at the first administration and, where available, compared scores across 2 administrations using non-parametric tests. Spearman correlations were used to explore associations between awareness of diagnosis/prognosis and symptom burden. In parallel, semi-structured interviews explored the subjective meaning of "being at peace with oneself"; responses were examined through thematic content analysis. IPOS administration highlighted frequent needs related to constipation, oral discomfort, weakness, drowsiness, anxiety, and concerns about family members. Awareness of diagnosis and prognosis were positively correlated. Anxiety and not feeling at peace showed negative associations with awareness, particularly awareness of prognosis. Across administrations, most physical symptoms remained stable, while anxiety and depressive feelings increased. Qualitative findings showed that inner peace was mainly associated with calmness, satisfaction with life, relational fulfilment, not having harmed others, and acceptance of one's condition. The integration of IPOS into routine hospice care may help multidisciplinary teams identify patients' evolving needs and translate them into more responsive individualized care plans. Combining structured IPOS scores with patient narratives can also make existential and psychosocial concerns more visible in clinical decision-making.
Effective palliative care requires a comprehensive assessment of symptoms to improve quality of life. This study evaluated the clinical utility of the Polish version of the Integrated Palliative Care Outcome Scale (IPOS-POL) in an inpatient setting. One hundred patients (68 oncological, 32 non-oncological) completed IPOS-POL at admission (T1) and after seven days (T2) between July 2022 and February 2023. While total IPOS scores remained stable (p = 0.3603), psychosocial distress increased significantly (p = 0.0217). Staff tended to underestimate drowsiness and psychosocial distress compared with patient self-reports. Female patients reported higher distress (p = 0.0374), and bedridden patients experienced more pain (p = 0.0146). Oncological patients reported greater pain (p = 0.0189), whereas non-oncological patients more frequently experienced breathlessness (p = 0.0297). These findings emphasize discrepancies in symptom perception between patients and staff and underline the importance of tailored interventions based on gender and functional status. Enhanced psychosocial support should be a priority in inpatient palliative care.
A culturally appropriate person-centred approach is needed in Indian palliative care settings to address the holistic concerns most distressing for patients with cancer. The study aimed to evaluate the measurement properties of the Hindi Integrated Palliative Outcome Scale (IPOS), a person-centred tool to assess the physical, emotional, and care-related concerns of patients living with serious illness in resource-limited settings.This validation study was conducted with 240 adults living with cancer and receiving home-based palliative care services through CanSupport, a charitable organisation operating across Delhi and National Capital Region. Using consecutive sampling, participants completed the Hindi IPOS, EuroQol 5-Dimension 5-Level questionnaire (EQ-5D-5L), and demographic schedules through in-person interviews. Half of the participants completed two follow-up assessments at four to six week intervals. Participant recruitment and outcome assessments at baseline and the first follow-up were conducted in person by home-based palliative care teams. Due to COVID-19constraints, the second follow-up assessment for a small subset of participants (10 patients) was completed via video call. Measurement properties assessed included structural validity (exploratory and confirmatory factor analysis), internal consistency, test-retest reliability, construct validity, and responsiveness to change. Confirmatory factor analysis supported a three-factor structure (CFI = 0.845, RMSEA = 0.062, TLI = 0.794), aligning with the hypothesized model. Internal consistency was moderate to high for physical (α = 0.67) and emotional (α = 0.74) subscales, while the communication and quality of care subscale demonstrated low consistency (α = 0.35). Construct and known-groups validity were supported by associations with EQ-5D-5L and cancer stage (p < 0.001). The physical subscale detected meaningful changes over time. Open-text responses provided insight into unaddressed symptoms and psychosocial needs. IPOS Hindi is a valid, reliable, and culturally appropriate tool to assess palliative care needs in patients with advanced cancer. It supports person-centred care and can inform policy and practice of palliative care delivery.
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Patients with gastro-intestinal (GI) cancer have a high symptom burden; however, comparative data to other cancers is lacking. The aim is to determine symptom prevalence for people with GI cancer receiving specialist palliative care in the community. Secondary analysis of anonymised routinely collected symptom registry data from those receiving community-based specialist palliative care, between 2020 and 2023. One thousand seven hundred thirty-three patients with GI cancer received 2,332 episodes of specialist palliative care. Common symptoms were: - pain (77% prevalence in GI cancer vs 73% other cancers); with 49% reporting being moderately/severely/overwhelmingly affected in GI vs 46% in other cancers. - nausea (34% in GI cancer vs 25% other cancers); with 16% moderately/severely/overwhelmingly affected in GI vs 11% in other cancers. - vomiting (17% in GI cancer vs 11% other cancers); with 8% moderately/severely/overwhelmingly affected in GI vs 5% in other cancers. - poor appetite (77% in GI cancer vs 68% other cancers); with 56% moderately/severely/overwhelmingly affected in GI vs 46% in other cancers. poor mobility (79% in GI cancer vs 84% other cancer); with 53% moderately/severely/overwhelmingly affected in GI vs 62% in other cancers. This novel study provides comparative evidence about the nature of the high symptom burden for those with GI cancer and shows that poor appetite, nausea, vomiting, and worse mobility are more prevalent compared to other cancers, while pain and weakness are of similar prevalence. The underlying reasons may relate to illness trajectory, referral timing, or other causes and need further exploration.
Background/Objectives: The Integrated Palliative Outcome Scale (IPOS) was developed for use in patients with advanced, life-limiting conditions. This study aimed to apply the IPOS in an inpatient hospice setting in Poland, incorporating both patient- and healthcare staff-reported perspectives in cancer and non-cancer populations. Methods: Patients' needs were assessed in 112 individuals (86 patients with cancer [C] and 26 with non-cancer diagnoses [nC]) using the Polish version of the IPOS. Assessments were conducted twice: within 24 h of admission (A1) and after 7 days (A2). Results: The mean age of the study population was 73.9 ± 11.9 years, and 63 patients (56.2%) were male. At A1, the total IPOS score reported by staff was significantly lower than that reported by patients (p < 0.01), primarily due to lower scores in the psychosocial domain (p < 0.001), while somatic domain scores were comparable. At A2, no significant changes were observed in total IPOS scores or in any domain in either patient- or staff-reported assessments. At A1, total IPOS scores did not differ significantly between C and nC groups. However, psychosocial domain scores were higher in the nC group (p < 0.01). Patients with non-cancer conditions reported higher levels of anxiety (p < 0.05), as well as greater needs related to feeling at peace (p < 0.01), sharing feelings (p < 0.05), and access to information (p < 0.05). Conclusions: Our findings underscore the multidimensional nature of suffering and highlight the need for more comprehensive recognition and assessment of psychosocial needs in palliative care patients, particularly those with non-cancer diagnoses.
Patient-reported outcome measurement supports high quality patient-centred palliative care. Little is known about whether their digital application is feasible in palliative home care. To test the feasibility of digital patient-reported outcome measure (ePROM) in specialist palliative home care (SPHC)Design:A feasibility study employing a mixed-methods design (Palli-MONITOR Phase II). The tested ePROM intervention was based on the electronic version of the Integrated Palliative Care Outcome Scale (eIPOS). Data collection included the recruitment and drop-out rates, ePROM user characteristics and information on technical feasibility, and focus groups with SPHC professionals. Descriptive statistics were used to analyse the quantitative data, while focus groups were analysed using the framework approach. Integrated analysis was conducted through joint display. Four German SPHC teams; patients used personal devices to complete eIPOS, with data sent to the SPHC electronic medical record; professionals joined focus groups. The overall recruitment rate was 4.7% (82/1744), and 22.7% (82/361) among eligible patients. 60/82 patients completed the study. A total of 470 eIPOS forms were submitted to the SPHC teams. The rate of non-responses for closed-ended IPOS-items was low (max. 5.3%). Professionals noted that recruitment was challenged by patients' unstable conditions, short care duration, time constraints, team attitudes and technical barriers like limited internet access or device unfamiliarity. Not all patients in SPHC can use ePROMs due to limited life expectancy and technical barriers. However, consistent and complete use of eIPOS forms indicates that it is feasible for digitally literate patients and can effectively support care.
Patients with end-stage heart failure experience a significant symptom burden that is often poorly controlled. Although palliative care can improve symptom management and reduce hospital admissions, many patients still die in acute care settings. The unpredictable course of end-stage heart failure complicates the identification of patients who would benefit from early palliative care referral. To address this challenge, an integrated cardiac supportive care service was developed to engage these patients early, optimise symptom control, and ensure timely access to palliative care. The aim of this study is to document the symptom burden, using Patient-Reported Outcome Measures, for patients with end-stage heart failure on admission to the cardiac supportive care service. A prospective observational study was undertaken in a tertiary hospital service in Sydney, Australia between January 2020 and July 2022. Patients were included if they had a recent admission for heart failure or had heart failure with breathlessness or chest pain at rest or on minimal effort. The cardiac supportive care service, consisting of initial home visits and follow-up reviews conducted by a palliative care physician and cardiac nurse practitioner, collected information using the Dyspnoea-12 (D-12) Questionnaire and the Integrated Palliative Care Outcome Scale (IPOS). Symptom scores from these tools were analysed in relation to patient mortality, with Kaplan-Meier survival curves and Cox regression used to assess the association between symptom burden and time to death. A total of 114 patients were included in this study. Both the IPOS and D-12 scores indicated a substantial and clinically relevant symptom burden for this cohort of patients. High mean scores on the IPOS were observed for weakness (2.6, standard deviation [SD] 1.2), shortness of breath (2.6, SD 1.2), and sore/dry mouth (2.5, SD 1.3). Sore/dry mouth was the most frequent severe or overwhelming symptom (59%). The D-12 showed that descriptors of breathlessness most commonly rated as severe were "My breathing is exhausting" (40%), "My breathing is distressing" (39%), and "I feel short of breath" (38%). Patients with an IPOS score in the highest quartile had an elevated mortality risk. The survival of patients in this cohort was 17.1 months. Patients with end-stage heart failure experience a substantial and frequently severe symptom burden, including breathlessness, dry mouth, and weakness. This study demonstrates the significant unmet need in this patient population and highlights the opportunity for integrated and proactive palliative care, delivered through a cardiac supportive care service. This model of care can optimise symptom management, facilitate advance care planning, and ensure timely referral to palliative care.
BACKGROUND: Periodic evaluation of the psychometric properties of palliative care outcome measures is essential to ensure accurate assessment of patient outcomes and to support ongoing improvements in care quality. This study aimed to assess the psychometric properties of three tools: the Integrated Palliative Care Outcome Scale (IPOS), the Symptom Assessment Scale (SAS), and the Palliative Care Problem Severity Score (PCPSS). METHODS: We conducted a multicentre study using de-identified data collected from 378 participants. Internal consistency was assessed using Cronbach’s alpha for all tools, and confirmatory factor analysis was performed for the IPOS. Convergence and discriminant validity were examined for the SAS and PCPSS by analysing the correlations between similar and dissimilar items, respectively. Lastly, known-groups comparison validity was assessed. RESULTS: Of the 378 participants, 54.5% were male, and most (77.5%) had cancer. Internal consistency was good for the IPOS total (α = 0.81), acceptable for the SAS (α = 0.70), and marginal for the PCPSS (α = 0.65). A strong correlation was observed between the pain construct of SAS and PCPSS (r = 0.74). Both the PCPSS and SAS effectively discriminated symptoms between palliative care phases and settings of care in known-group comparisons. The physical domain of the IPOS demonstrated good discriminative ability in differentiating symptoms between cancer and non-cancer patients. Our data confirmed the three theoretical domains of the IPOS—physical, emotional, and informational. CONCLUSION: The IPOS demonstrated higher reliability using internal consistency, whereas SAS and PCPSS showed good validity in known group comparisons. These findings may inform the selection of context-appropriate palliative care outcome measures.
The clinical characteristics of terminal dyspnea, including opioid effects, adverse events, and outcome acquisition rates, remain largely unexplored. To investigate the clinical characteristics of terminal dyspnea in patients with cancer starting regular systemic opioid therapy, classified by clinician-predicted prognosis (days, weeks, months). This secondary analysis of a multicenter, prospective, observational study included adult patients with cancer who began regular systemic opioid therapy for dyspnea at 12 palliative care sites in Japan. Patients were classified into three prognostic groups: days (1-14 days), weeks (15-56 days), and months (>56 days) according to clinician-predicted survival [CPS]. Dyspnea intensity (numerical rating scale [NRS], Integrated Palliative care Outcome Scale [IPOS]) was assessed every 24 hours for 3 days. Adverse events and outcome acquisition rates were also evaluated. A total of 402 patients were enrolled (days: 186, weeks: 174, months: 42). NRS and IPOS scores significantly improved across all groups. At 72 hours, mean NRS decreased from 7.2 to 4.5 in the days group, 6.5 to 3.9 in the weeks group, and 5.8 to 3.2 in the months group (p < 0.001 for all). Mean IPOS showed similar reductions. Somnolence and delirium increased in the days group, whereas such trends were not observed in the other groups. NRS acquisition rates declined in the days group (73.1-55.2%) but remained high in the weeks and months groups. IPOS acquisition rates were consistently high across all groups. Opioids alleviate dyspnea in patients with cancer regardless of CPS, but persistent symptoms remain. In imminently dying patients, adverse events were common and NRS was often not assessable. Further research should be conducted to optimize the assessment and management of patients with terminal dyspnea.
We aimed to evaluate the correlation between postoperative seizures (POS) and overall survival in patients with newly diagnosed supratentorial isocitrate dehydrogenase (IDH)-wild glioblastoma treated with radiotherapy plus concomitant and adjuvant temozolomide. This study included 122 patients with newly diagnosed supratentorial IDH-wild glioblastoma who were treated at our hospital between May 2007 and September 2022. Seizures occurring within 7 days after surgery were defined as immediate POS (iPOS). Moreover, seizures from the 8th day after the surgery were defined as delayed POS (dPOS). The median follow-up period and median survival time (MST) from surgery in the entire cohort were 19.3 and 20.4 months, respectively. The rates of iPOS and dPOS in this study were 6.6% (n=8) and 38.5% (n=47), respectively. The MST of patients with iPOS and without iPOS was 27.6 and 20 months, respectively. There was no significant difference between with iPOS and without iPOS. The median time to onset of dPOS was 126 days after surgery. The MST of patients with dPOS and without dPOS was 25.9 and 18.4 months, respectively. Patients with dPOS showed significantly longer survival than those without dPOS (p=0.024). Occurrence of seizures at the initial manifestation of disease was found to be significantly more likely to cause dPOS (p=0.044). Among patients with newly diagnosed supratentorial IDH-wild glioblastoma, the prognosis of patients with seizures in the postoperative course was better than that of patients without dPOS.
BACKGROUND: The use of patient-reported outcomes (PROs) can facilitate the reduction of the severity of patient symptoms. Several countries have implemented projects that routinely use PROs in palliative care settings, resulting in increased patient symptom improvement rates. In Japan, a pilot study of hospital-based palliative care teams was conducted in 2021; however, no study has been conducted in palliative care units (PCUs). This study assessed patient symptom improvement rates using PROs and evaluated the feasibility of routine PRO assessment and data collection in PCUs in Japan. METHODS: We conducted a multicenter, prospective, observational study in eight PCUs. Patients newly admitted to PCUs between June and September 2024 were included in this study. Based on the analysis requirement of 369 PRO responders and an assumed 60% response rate, 615 participants were targeted for enrollment (369/0.60). Data on four symptoms (pain, shortness of breath, nausea, and worries or concerns) were collected weekly using the Integrated Palliative Outcome Scale (IPOS) from admission to week 4. RESULTS: A total of 550 patients were admitted to the PCUs; 388 self-reported patients were included in the analysis. The PRO response rate was > 70% at all timepoints. The IPOS score decreased statistically only between admission and week 1 (pain, p < 0.001; shortness of breath, p < 0.001; nausea, p = 0.001; worries or concerns, p < 0.001). A 1-point decrease in IPOS scores was observed for pain (from 2 to 1), shortness of breath (from 2 to 1), worries or concerns (from 2 to 1) from admission to week 1, and shortness of breath from week 3 to week 4 (from 1 to 0). In the “severe/moderate to absent/mild” and “keep absent/mild” categories, benchmark improvement rates were achieved only for nausea (70.7%; 90.0%). CONCLUSIONS: A 1-week regular evaluation using PROs may be feasible in PCUs in Japan. The greatest improvement in symptom scores occurred within the first week following PCU admission, with an observed plateau in subsequent weeks, suggesting that the first week may be important for assessing the quality of care in PCUs.
Randomized controlled trials (RCTs) show that integrated palliative care can improve symptoms compared with usual care in many serious illnesses, yet there are no comparable RCTs in chronic kidney disease (CKD). We conducted a pilot feasibility RCT comparing kidney palliative care (KPC) integrated with CKD care with usual CKD care. English and Spanish speakers aged ≥18 years with CKD stage IV and V, or receiving dialysis, seen at an urban safety-net hospital. Participants were randomized to usual CKD care or to usual CKD care plus 6-monthly ambulatory KPC visits. Primary outcomes were feasibility of recruitment, retention, intervention delivery, and data collection. Secondary outcomes included change in symptom burden at 6 months, measured by the Integrated Palliative Outcome Scale (IPOS)-Renal (lower scores represent lower burden), quality of life measured by the Kidney Disease Quality of Life 36-item survey, and engagement in advance care planning. Feasibility outcomes are reported as proportions and clinical outcomes as descriptive summaries of change in scores. Of the 146 people approached, 84 (56%) consented, 75 (89%) were randomized, and 57 (76%) completed the trial. 56% of participants were Hispanic and 32% were Black, with 49% on Medicaid and 13% uninsured. The mean age of participants was 61 years, and 31% were receiving dialysis. A mean of 4-6 intervention visits was attended. At 6 months, the intervention group had a 4.1-point decrease in IPOS score (standard deviation 13.4), whereas the mean IPOS score of the control group increased by 0.6 points (standard deviation 7.8) from baseline. Small sample size and limited number of providers to assess generalizability. We demonstrate the feasibility of an RCT comparing integrated KPC with usual CKD care in a safety-net hospital. Although this study was not powered to detect significance in change of clinical outcomes, our findings suggest that there is value in testing KPC in efficacy trials and that these are feasible. Chronic kidney disease (CKD) causes a substantial number of symptoms that can impair quality of life. Palliative care, a specialty that provides symptom management and assists with complex medical decisions, has been shown to improve symptoms in non--kidney-disease serious illnesses; however, there is no comparable evidence in CKD. To address this, we conducted a randomized controlled pilot feasibility trial comparing integrated palliative and CKD care with usual CKD care in a safety-net hospital among 75 diverse individuals with advanced CKD. We found that this approach was feasible, meeting thresholds for recruitment retention and data collection, setting the foundation for future, larger efficacy trials.
Nausea is a common and distressing symptom in palliative care, substantially impairing quality of life. Despite guideline-based antiemetic therapy, a considerable proportion of patients continue to experience substantial nausea burden. Evidence guiding personalised management strategies in this setting remains limited. This study aimed to identify routinely available laboratory markers and clinical factors associated with persistent nausea burden at peak antiemetic therapy. In this retrospective exploratory study, 788 admissions to a specialised palliative care unit (2019-2022) were screened, and 223 cases with documented nausea were included. Nausea burden and associated symptom burdens were assessed at the time of "peak antiemetic therapy", defined as the highest level of antiemetic treatment reached during admission beyond which therapy was not further escalated. Symptom burden was measured using the staff-completed Integrated Palliative Outcome Scale (IPOS). Baseline demographic, clinical, and laboratory variables were assessed at admission. Patients were stratified according to persistent nausea burden (IPOS ≥ 2 vs. < 2). Univariable analyses were performed to identify a core set of associated factors. Baseline variables meeting significance criteria were entered into complete-case binary logistic regression with bootstrap validation (1,000 samples; N = 143). Multiple testing was addressed using the Benjamini-Hochberg (BH) procedure. Persistent nausea burden at peak antiemetic therapy was observed in 33% of patients with nausea. After BH adjustment, vomiting and poor appetite (both IPOS ≥ 2), cystatin C levels, broad-spectrum antiemetic therapy, in-house mortality, ileus, and peritoneal carcinomatosis were significantly associated with persistent nausea burden at peak antiemetic therapy in univariable analyses (BH-adjusted p < 0.05). Of these, the baseline variables ileus, peritoneal carcinomatosis, and cystatin C levels constituted the core set for multivariable analysis. In logistic regression, higher cystatin C levels were associated with lower odds of persistent nausea burden (OR = 0.235; 95% CI [0.08-0.47]; BH-adjusted p = 0.003), whereas peritoneal carcinomatosis was associated with higher odds (OR = 3.967; 95% CI [1.54-12.29]; BH-adjusted p = 0.005). Persistent nausea burden co-occurred with diverse clinical factors, underscoring its multifactorial nature in advanced disease. Nausea management in palliation remains a major challenge far beyond the application of antiemetics. Prospective studies are warranted.
BACKGROUND: In Germany, specialist palliative care (SPC) is provided by palliative care units (PCU), hospital-based palliative care advisory (PCA) teams, and specialist palliative home care (SPHC) teams. Systematic cross-setting comparisons are lacking. Such comparisons are essential to identify setting-specific patient needs and differences and to inform tailoring of care structures, resource allocation, and training to setting-specific needs. We therefore aim to compare settings regarding patient characteristics, symptom/problem burden, functional status, and palliative care phase. METHODS: Secondary analysis of a prospective, cross-sectional, multi-centre study including 3,115 care episodes (PCU: 753; PCA: 1,568; SPHC: 794) across 29 SPC services. Data collection included symptom/problem burden using the Integrated Palliative care Outcome Scale (IPOS), functional status by Australia-modified Karnofsky Performance Status (AKPS), and Palliative Care Phase. Presence of symptoms was defined as any IPOS item ≥ moderate, sometimes or partly addressed. RESULTS: Patients had a mean age of 72 years, 51% were female, and 73% had cancer. Weakness (78–90%) and poor mobility (71–85%) were most frequent across all settings. Pain (54%) and poor appetite (63%) were most pronounced in SPHC, while anxiety (61%) dominated in PCA. Median IPOS sum scores were highest in SPHC (24), followed by PCA (22) and PCU (21). Median AKPS scores were overall low, with 30 in inpatient settings and 40 in SPHC, reflecting significant functional impairment. Palliative care phases varied significantly (p < .001), with the unstable phase predominant in PCU (43%) and PCA (34%), and the stable phase in SPHC (43%), on admission. High rates of “cannot assess” responses, especially in psychosocial and practical domains, influenced prevalence estimates. CONCLUSIONS: Patients in German SPC experience substantial symptom burden and diverse care needs, varying by setting. The findings highlight the necessity for setting-tailored assessment tools, specialized training, and systemic development to improve care quality and patient outcomes.
As population aging accelerates, the demand for high-quality end-of-life (EOL) care continues to rise. However, a substantial proportion of patients with terminal cancer still experience death in acute-care hospitals without adequate palliative care. Consultative palliative care (CPC) represents a feasible model for delivering palliative care without requiring dedicated inpatient units, yet evidence evaluating its clinical impact remains limited. In this study, we developed a structured hospital-based CPC model tailored to the Korean healthcare system, the Korea Holistic Optimized Palliative care for End-of-life (K-HOPE) model, and prospectively evaluated its clinical impact. K-HOPE was delivered by an interdisciplinary CPC team in a tertiary hospital. Unmet needs were assessed using the Integrated Palliative care Outcome Scale (IPOS), and longitudinal changes were analyzed using mixed-effects models for repeated measures. Among patients who died during hospitalization, quality of death was evaluated using the Good Death Scale (GDS). A total of 84 patients with terminal cancer received K-HOPE. The total IPOS score significantly decreased over time (β = -10.4, 95% CI -12.8 to -8.0; p < 0.001), indicating reduced overall burden and unmet needs. Significant improvements were observed in psychological distress (p = 0.010) and communication and information needs (p < 0.001), whereas changes in physical symptoms and practical concerns were not statistically significant. Among 22 patients who died during hospitalization, 59.1% achieved a good quality of death (GDS ≥ 12). Longer duration of CPC involvement was significantly associated with higher quality of death and remained an independent predictor in multivariable analysis. These findings suggest that the K-HOPE CPC model improves communication and overall EOL care experiences among hospitalized patients with terminal cancer, indicating that meaningful improvements in EOL care can occur even during short periods of CPC involvement. Structured CPC integrated into routine oncology practice represents a feasible strategy for improving EOL care in tertiary hospitals, and a standardized CPC framework may enhance the consistency and reproducibility of care delivery within the Korean healthcare system.
IntroductionAdvanced heart failure (HF) often requires comprehensive home-based management, including attention to palliative care needs. Early identification of these needs can improve symptom control, safety, and quality of life for patients and families.PurposeThe purpose is to examine end-of-life (EOL) and palliative care needs in the context of home-based HF management using systematic nursing observations and valid assessment questionnaires.MethodsThis descriptive, observational study assessed home palliative care needs among 18 patients with HF and their family caregivers enrolled in a rural Appalachian clinical trial. Data sources included questionnaires and nurses' observation notes. Home palliative care needs were assessed using: (1) the Integrated Palliative Care Outcome Scale (IPOS) to capture symptom burden; (2) EOL goals and preferences to identify care priorities; (3) a home safety checklist to evaluate environmental risks; and (4) nurse observation notes to document home visits and care challenges.ResultsPatients with HF exhibited high symptom burden and home safety gaps. IPOS scores indicated persistent physical and psychosocial symptoms, with partial patient, caregiver concordance on EOL priorities but notable deficits in advance care planning. Nurse observations revealed additional HF care challenges, including medication adherence and emotional distress. Combining standardized assessments with nurse observations provided a comprehensive view of home-based palliative care needs.ConclusionIntegrating patient and caregiver perspectives with nurse-led assessments enables proactive, home-based interventions that improve safety, symptom control, and shared decision-making. These strategies are essential for delivering patient-centered palliative care for individuals with advanced HF.