Integrated Palliative Outcome Scale Research Articles

Assessing the sensitivity and acceptability of the Royal Marsden Palliative Care Referral “Triggers” Tool for outpatients with cancer

PurposeTo evaluate the use, acceptability, and experience of a seven-item palliative care referral screening tool in an outpatient oncology setting.MethodsA two-phase convergent parallel mixed-methods study. Patient participants who met any of the “Royal Marsden Triggers Tool” criteria were compared with those who did not in terms of demographic data, palliative care needs (Integrated Palliative Outcome Scale, IPOS) and quality of life indicators (EORTC-QLQ-C30).In-depth interviews were carried out with patients and oncology staff about their views and experience of the “Royal Marsden Triggers Tool”. Qualitative and quantitative data were triangulated at data interpretation.ResultsThree hundred forty-eight patients were recruited to the quantitative phase of the study of whom 53% met at least one of the Triggers tool palliative care referral criteria. When compared with patients who were negative using the Triggers tool, “Royal Marsden Triggers Tool” positive patients had a lower quality of life (EORTC QLQ-C30 Global Health Status scale (p < 0.01)) and a higher proportion had severe or overwhelming physical needs on IPOS (38% versus 20%, p < 0.001). Median survival of “Royal Marsden Triggers Tool” positive patients was 11.7 months.Sixteen staff and 19 patients participated in qualitative interviews. The use of the tool normalised palliative care involvement, supporting individualised care and access to appropriate expertise.ConclusionThe use of a palliative care referral tool streamlines palliative care within oncology outpatient services and supports teams working together to provide an early holistic patient-centred service. Further research is needed to evaluate the effectiveness and feasibility of this approach.

The Association of Unmet Palliative Care Needs and Physical Frailty With Clinical Outcomes: A Prospective Study of Adults With Heart Failure.

People with heart failure, particularly those who are physically frail, experience complex needs that can be addressed by palliative care (PC). However, we have a limited understanding of how the intersection of unmet PC needs and physical frailty contributes to health-related quality of life (HRQOL) and risk for hospitalization or mortality. In this study, we sought to examine the association of unmet PC needs and physical frailty with clinical outcomes (baseline HRQOL and hospitalizations or mortality at 6 months). We recruited a convenience sample of community-dwelling persons with heart failure from an urban hospital system who were older than 50 years and hospitalized in the last year. We measured physical frailty using the FRAIL scale (nonfrail, 0-2; frail, 3-5), PC needs using the Integrated Palliative Outcome Scale (range, 0-58; higher scores indicating higher needs), and HRQOL using the Kansas City Cardiomyopathy Questionnaire (range, 0-100; higher scores indicate higher HRQOL). We performed multivariable linear regression to test the relationships between physical frailty, PC needs, and HRQOL, and multivariable logistic regression for associations with all-cause 6-month hospitalization or mortality. We also performed an exploratory analysis of 4 PC needs/frailty groups (high PC needs/frail, high PC needs/nonfrail, low PC needs/frail, low PC needs/nonfrail) with outcomes. In our overall sample (n = 298), mean (SD) age was 68 (9.8) years, 37% were women (n = 108), 28% identified as Black/African American (n = 84), and 65% had heart failure with preserved ejection fraction (n = 194). Mean PC needs score was 19.7, and frail participants (n = 130, 44%) had a significantly higher mean PC needs score than nonfrail participants (P < .001). Those with higher PC needs (Integrated Palliative Care Outcome Scale ≥ 20) had significantly worse HRQOL (P < .001) and increased odds of hospitalization or mortality (odds ratio, 2.5; P < .01) compared with those with lower PC needs, adjusting for covariates. Physically frail participants had significantly worse HRQOL (P < .001) and higher odds of hospitalization or mortality at 6 months (odds ratio, 2.6; P < .01) than nonfrail participants, adjusting for covariates. In an exploratory analysis, physically frail participants with high PC needs had the lowest HRQOL score, with an average score of 28.6 points lower (P < .001) and 4.6 times higher odds of hospitalization or mortality (95% confidence interval, 2.03-10.43; P < .001) than low-needs/nonfrail participants. Higher unmet PC needs and physical frailty, separately and in combination, were associated with lower HRQOL and higher odds of hospitalization or mortality. Self-reported PC needs and physical frailty assessment in clinical settings may improve identification of patients at the highest risk for poor HRQOL and hospitalization or mortality amenable to PC intervention.

Patient Reported Outcome Measurement (PROM) under real-life conditions of non-curable cancer outpatients with the Integrated Palliative Outcome Scale (IPOS) and NCCN-Distress Thermometer – A mixed methods study

ObjectiveProspective cohort study to test the real-life feasibility of longitudinal patient-reported outcome measurement PROM (Integrated Palliative Outcome Scale IPOS, and NCCN Distress Thermometer DT) required for outpatients with non-curable lung or prostate cancer in comprehensive cancer centers. MethodsAssessment with paper-based IPOS and DT was observed for 15 months. We analyzed response to patients' distress (requests for supportive and palliative services) following PROM. Focus groups to comprehensively explore the user experience of patients, informal caregivers and health care professionals (HCP) supplemented the analysis. ResultsNinety-seven percent (125/129) of the patients received a questionnaire once, but quarterly assessment as recommended by certification committees was achieved only in 50% and 31% of prostate and lung cancer patients. Although both instruments were well accepted, only IPOS showed a high content validity, because some patients had difficulties in understanding the DT. Patients felt comfortable with completing the PROM, and HCP found PROM helped to structure the patient encounter. Due to organizational deficiencies in the handling of the instruments and operationalization of reactions to identified distress, the referrals to supportive and palliative services were rare. ConclusionTo facilitate consequences from PROM it should be a standardized intervention rather than assessment alone. InnovationThe patient perspective improves the implementation of PROM under real-life clinical conditions.

Screening for Palliative Care Need in Oncology: Validation of Patient-Reported Outcome Measures

ContextLeading oncology societies recommend monitoring symptoms and support needs through patient-reported outcome measures (PROMs), but their use for assessing specialist palliative care (SPC) need has not yet been explored. Research on SPC integration has focused on staff-assessed screening tools, which are time-consuming. ObjectivesThis study aimed to assess the diagnostic validity of the Integrated Palliative Outcome Scale (IPOS) and NCCN Distress Thermometer (NCCN DT) in identifying need for SPC in patients with incurable cancer. MethodsIn a cross-sectional study, patients with incurable cancer (prognosis <2 years) completed PROMs. In an independent process, the palliative care consultation service (PCCS) assessed the need for SPC in each patient through multiprofessional case review, and this was used as the reference standard. ROC analyses were employed to determine diagnostic validity. ResultsOf the 208 participants, 71 (34.1 %) were classified as having SPC need by the PCCS. Aiming for a minimum sensitivity of 80%, a cut-off of ≥2 items with high/very high burden in the IPOS resulted in a 90.2% sensitivity (specificity = 50; AUC = 0.791; CI 95%= 0.724–0.858). A cut-off of ≥5 resulted in a sensitivity of 80 % for NCCN DT (specificity = 49.5 %; AUC = 0.687; CI 95% = 0.596–0.777). ConclusionPROMs are useful for identifying SPC need in cancer patients. Their implementation might facilitate timely integration of SPC. Future research should focus on an integrated assessment approach with PROMs that combines the requirements of the different specialties to save patient and staff resources.

Feasibility of Symptom monitoring WIth Feedback Trial (SWIFT) for adults on hemodialysis: a registry-based cluster randomized pilot trial

BackgroundPatients with kidney failure on hemodialysis (HD) experience considerable symptom burden and poor health-related quality of life (HRQoL). There is limited use of patient reported outcome measures (PROMs) in facility HD units to direct immediate care, with response rates in other studies between 36 to 70%. The aim of this pilot study was to evaluate feasibility of electronic PROMs (e-PROMs) in HD participants, with feedback 3-monthly to the participants’ treating team, for severe or worsening symptoms as identified by the Integrated Palliative Outcome Scale (IPOS-Renal), with linkage to the Australian and New Zealand Dialysis and Transplant (ANZDATA) registry, compared with usual care.MethodsThis is a registry-based cluster-randomized controlled pilot trial involving all adults receiving HD in 4 satellite units in Australia over a 6-month period. HD units were cluster randomized 1:1 to the control (HRQoL data collection only) or intervention arm (symptom monitoring with feedback to treating team every 3 months). Feasibility was assessed by participant response rate (percentage of eligible HD participants, including new incident participants, who completed the questionnaire at each time point); retention rate (percentage of participants who completed the baseline questionnaire and all subsequent measures); and completion time. HRQoL and symptom burden scores are described.ResultsThere were 226 unique participants who completed the e-PROMs (mean age 62 years, 69% males, 78% White-European, median dialysis vintage 1.62 years). At 6 months, response rate and retention rate for the intervention arm were 54% and 68%, respectively, and 89% and 97% in the control arm. Median time to complete IPOS-Renal was 6.6 min (5.3, 10.1) at 3 months, and when combined with the outcome measure (EQ-5D-5L), the median time was 9.4 min (6.9, 13.6) at 6 months.ConclusionsElectronic symptom monitoring among HD participants with feedback to clinicians is feasible. Variations in response and retention rates could be potentially explained by the lengthier questionnaire, and higher frequency of data collection time points for participants in the intervention arm. A definitive national RCT is underway.Trial registrationACTRN12618001976279 (07/12/2018).

Palliative Care Needs of Physically Frail Community-Dwelling Older Adults With Heart Failure.

Physical frailty is emerging as a potential "trigger" for palliative care (PC) consultation, but the PC needs of physically frail persons with heart failure (HF) in the outpatient setting have not been well described. This study describes the PC needs of community dwelling, physically frail persons with HF. We included persons with HF ≥50 years old who experienced ≥1 hospitalization in the prior year and excluded those with moderate/severe cognitive impairment, hospice patients, or non-English speaking persons. Measures included the FRAIL scale (0-5: 0=robust, 1-2=prefrail, 3-5=frail) and the Integrated Palliative Outcome Scale (IPOS) (17 items, score 0-68; higher score=higher PC needs). Multiple linear regression tested the association between frailty group and palliative care needs. Participants (N=286) had a mean age of 68 (range 50-92) were majority male (63%) and White (68%) and averaged two hospitalizations annually. Most were physically frail (44%) or prefrail (41%). Mean PC needs (IPOS) score was 19.7 (range 0-58). On average, participants reported 5.86 (SD 4.28) PC needs affecting them moderately, severely, or overwhelmingly in the last week. Patient-perceived family/friend anxiety (58%) weakness/lack of energy (58%), and shortness of breath (47%) were the most prevalent needs. Frail participants had higher mean PC needs score (26) than prefrail (16, P < 0.001) or robust participants (11, P < 0.001). Frail participants experienced an average of 8.32 (SD 3.72) moderate/severe/overwhelming needs compared to prefrail (4.56, SD 3.77) and robust (2.39, SD 2.91) participants (P < 0.001). Frail participants reported higher prevalence of weakness/lack of energy (83%), shortness of breath (66%), and family/friend anxiety (69%) than prefrail (48%, 39%, 54%) or robust (13%, 14%, 35%) participants (P < 0.001). Physically frail people with HF have higher unmet PC needs than those who are nonfrail. Implementing PC needs and frailty assessments may help identify vulnerable patients with unmet needs requiring further assessment and follow-up.

Integrating patient- and caregiver-reported outcome measures into the daily care routines of specialised outpatient palliative care: a qualitative study (ELSAH) on feasibility, acceptability and appropriateness

BackgroundThe use of patient-reported outcome measures (PROM) and caregiver-reported outcome measures can raise the patient centeredness of treatment and improve the quality of palliative care. Nevertheless, the everyday implementation of self-report in patients and caregivers is complex, and should be adapted for use in specific settings. We aimed to implement a set of outcome measures that included patient and caregiver self- and proxy-reported outcome measures in specialised outpatient palliative care (SOPC). In this study, we explore how the Integrated Palliative Outcome Scale (IPOS), IPOS Views on Care (IPOS VoC) and the Short-form Zarit Caregiver Burden Interview (ZBI-7) can be feasibly, acceptably and appropriately implemented in the daily care routines of SOPC.MethodsFive SOPC teams were trained, and used the outcome measures in daily practice. Team members were mainly nurses and physicians. To investigate their feedback, we used a multi-method qualitative design consisting of focus groups with SOPC-team members (n = 14), field notes of meetings and conversations with the SOPC teams. In an iterative process, we analysed the findings using qualitative content analysis and refined use of the outcome measures.ResultsWe found that integrating patient and caregiver outcome measures into daily care routines in SOPC is feasible. To improve feasibility, acceptability and appropriateness, the resulting burden on patients and relatives should be kept to a minimum, the usefulness of the measures must be understood, they should be used considerately, and administration must be manageable. We removed ZBI-7 from the set of measures as a result of feedback on its content and wording.ConclusionsSOPC-team members have reservations about the implementation of PROM in SOPC, but with appropriate adjustments, its application in daily care is feasible, accepted and perceived as appropriate. Previous to use, SOPC-team members should be trained in how to apply the measures, in the design of manageable processes that include integration into electronic documentation systems, and in ongoing evaluation and support. They should also be taught how useful the measures can be.Trial registrationMay 19th, 2017, German Clinical Trials Register DRKS-ID: DRKS00012421.

Integrated Palliative Outcome Scale for People with Dementia: easy language adaption and translation

BackgroundIn this article, we report the cultural adaption and translation of the Integrated Palliative Care Outcome Scale for People with Dementia (IPOS-Dem) into a Swiss-German easy language version for proxy assessment of people with dementia living in Swiss nursing homes. The Swiss-German easy language version of the IPOS-Dem was developed and culturally adapted in a six-phase process from the German IPOS-Dem using recommended guidelines. With nursing home staff and laypeople, the conceptual definition and relevance of IPOS-Dem items were established during phase I. Phase II encompassed the completion of forward translations. Independent native speakers blind to the original scale translated and back-translated the Swiss-German easy language version. The resulting IPOS-Dem version was then blindly back-translated in phase III. Experts reviewed all resulting translations in phase IV to produce a pre-final IPOS-Dem version. Finally, the phase V cognitive debriefing involved two focus groups assessing the pre-final IPOS-Dem version. Phase V included cognitive interviews with laypeople (n = 2), family members of those with dementia (n = 4) and staff from different care contexts (n = 12).ResultsUsing easy language specialists yielded a clinically relevant, comprehensive and understandable translation. In addition, face and content validity for the easy language version were established in the cognitive interviews.ConclusionsWith an easy language IPOS-Dem, all frontline staff and family members can be empowered to communicate their observations after caring interactions. Enhanced clinical communication with easy language tools shows the potential for research and clinical applications. In addition, attentive use in scales of easy language communication may foster increased engagement with untrained laypeople in clinical and care research.

Symptomverlauf, Betreuungsqualität und Zufriedenheit mit der spezialisierten ambulanten Palliativversorgung (SAPV) aus Patient*innenperspektive: eine bundesweite prospektive Längsschnittstudie

IntroductionSince 2007, patients receiving palliative care have been entitled to specialised outpatient palliative care (SAPV). Until now, the quality of care of the SAPV was only regionally focussed or in relation to individual SAPV teams. A nationwide analysis of outcome quality is still awaited. The organisation and design of structures and processes vary greatly from region to region, which complicates a comparative assessment of implementation. One way to measure the quality of the heterogeneous structures and processes is to collect patient-reported outcomes. Here, it is possible to use symptom burden, quality of care and patient satisfaction with SAPV care, since patients’ quality of life is a central focus of SAPV care. This article is part of the research project SAVOIR, which is funded by the G-BA Innovation Fund. MethodsFor this prospective longitudinal survey of the outcome quality of SAPV, structured data were collected at two measurement points (t1 and t2 [4–10 days after t1]). A nationwide, representative sample of SAPV teams was targeted. These teams performed consecutive recruitment of patients included in SAPV. Two questionnaire instruments were used: the IPOS (Integrated Palliative Outcome Scale) at t1 and t2, and the QUAPS (quality control in specialized palliative home care) questionnaire at t2. Patient-reported outcomes measured improvement in symptom burden, patient satisfaction, and quality of care from the patient perspective. In addition, an exploratory stepwise regression analysis of factors associated with satisfaction was conducted. Results42 SAPV teams agreed to participate in the study. They recruited a total of 964 patients at measurement time t1 (t2: 690 patients). The analyses show that the number and intensity of symptoms from the patient perspective decreased significantly during the course of SAPV treatment, especially pain, gastrointestinal symptoms, but also psychological complaints. 74.7 % of the patients reported a high level of satisfaction with SAPV. Also, the quality of care was considered to be high by the patients. Exploratively, five factors were extracted that explain 55 % of the satisfaction with SAPV: respect for the patient's decision, quality of communication, support with practical problems, and referral to care measures as well as symptom relief between the two measurement points. ConclusionsThe SAPV patients recruited from a total of nine KV regions reported a reduced symptom burden and a high level of satisfaction with SAPV and rated the quality of care provided by SAPV as high.

1457P The end-of-life experiences for cancer patients with COVID-19 across the two peak pandemic waves

The COVID-19 (C-19) pandemic has seen much research scrutinising the impact of C-19 on cancer patients, focusing on understanding the impact of a cancer diagnosis and anti-cancer treatments on mortality. Yet there is paucity of work regarding the end-of-life care (EOLC) for cancer patients dying with C-19. Retrospective record review of all non-ventilated patients who died in a tertiary referral UK cancer centre with known or suspected C-19 across the 2 peak pandemic waves from 25/03/20 – 01/05/20 and 05/12/20 – 01/03/21. Demographics and risk factors for severe C-19 were described. EOLC assessment considered palliative care (PC) needs, medications prescribed and advance care plans including Treatment Escalation Plans (TEP) and Do Not Attempt Resuscitation (DNAR) orders. 34 patients were included. Most patients were female (18) and White British (19), mean age was 69 (45-82). 8 patients had recognised cardiovascular risk factors; 11 patients had no comorbidities additional to cancer. 26 patient had metastatic disease, 30 were receiving palliative treatment. Most patients were referred to PC for symptom control (20), 8 were referred for EOLC. All patients had DNAR orders and TEPs. The median number of PC reviews was 5 (range 1-24). Integrated Palliative Outcome Scale (IPOS) (a holistic assessment tool used in clinical care) scores on first assessment (n=24) recorded the main symptoms as weakness, lacking peace and anxiety. Family anxiety was the highest scoring aspect. Medical management at the end-of-life was, however, generally uncomplicated; total opioid (oral morphine equivalent) and benzodiazepine doses administered in last 24 hours before death were relatively low, median dose (range) 30mg (5-180 mg) and 10mg (0-30mg) respectively. With prompt recognition and access to standard EOLC, the symptom management of cancer patients dying from C-19 is relatively uncomplicated. As a transmissible disease, associated with social anxiety and restrictions, death from C-19 is, however, undeniably complicated. Timely acknowledgment of the vulnerability of patients with advanced cancer and C-19 is essential to facilitate early communication about patients’ priorities and wishes, and enhance family support.

Prevalence of Life-Limiting and Life-Threatening Illness and Associated Palliative Care Needs Among Hospital Inpatients in Sudan

ContextEvidence is needed to inform expansion of hospital-based palliative care in low and middle-income countries. ObjectivesThis study aimed to measure need for palliative care among adult inpatients at five hospitals in Sudan. Objectives were to 1) measure point prevalence of life-limiting and life-threatening illness (LL/LTI); 2) determine patient insight into diagnosis and prognosis; 3) assess palliative care-related symptoms and concerns. MethodsIn this two-day census, data were extracted from charts on documented LL/LTI for each occupied bed. For patients with LL/LTI, self-report data was collected on symptoms, concerns and understanding of diagnosis and prognosis using Integrated African Palliative Outcome Scale (IAPOS). Results1) Prevalence of LL/LTI in general hospitals was 30.9%-70.5%. 2) n = 439 patients gave self-report data (response rate 89.8%). Mean age was 52.3 (SD 17.8), 59% of patients correctly knew their diagnosis, and 36% knew their illness was progressive. Those with a non-cancer diagnosis were significantly less likely to know their prognosis (28.4% vs 40.7% respectively, P = 0.012). 3) Family anxiety was most burdensome (56.7% scoring on the two most severe categories on a 6-point Likert), followed by pain (52.4%), poor mobility (40.5%), patient worry (39.9%), and fatigue (36.9%). Patients unaware of prognosis had higher total IAPOS scores than those aware their prognosis was progressive, 38.9 (SD = 15.6) (t = -3.297, P = 0.001, mean difference = -5.010, 95% CI: -7.997, -2.023). ConclusionCare for those with life-limiting and life-threatening illness places a significant occupancy burden on public hospitals. Communication skills are required to provide patients with insight, and core palliative care skills for acute hospital clinicians are needed to manage the high burden of symptoms and concerns.

Empowering families facing end-stage nonmalignant chronic diseases with a holistic, transdisciplinary, community-based intervention: 3 months outcome of the Life Rainbow Program - CORRIGENDUM.

Objectives Families facing end-stage nonmalignant chronic diseases (NMCDs) are presented with similar symptom burdens and need for psycho-social–spiritual support as their counterparts with advanced cancers. However, NMCD patients tend to face more variable disease trajectories, and thus may require different anticipatory supports, delivered in familiar environments. The Life Rainbow Programme (LRP) provides holistic, transdisciplinary, community-based end-of-life care for patients with NMCDs and their caregivers. This paper reports on the 3-month outcomes using a single-group, pre–post comparison. Method Patients with end-stage NMCDs were screened for eligibility by a medical team before being referred to the LRP. Patients were assessed at baseline (T0), 1 month (T1), and 3 months (T2) using the Integrated Palliative Outcome Scale (IPOS). Their hospital use in the previous month was also measured by presentations at accident and emergency services, admissions to intensive care units, and number of hospital bed-days. Caregivers were assessed at T0 and T2 using the Chinese version of the Modified Caregiver Strain Index, and self-reported health, psychological, spiritual, and overall well-being. Over-time changes in outcomes for patients, and caregivers, were tested using paired-sample t-tests, Wilcoxon-signed rank tests, and chi-square tests. Results Seventy-four patients and 36 caregivers participated in this research study. Patients reported significant improvements in all IPOS domains at both 1 and 3 months [ranging from Cohen's d = 0.495 (nausea) to 1.793 (depression and information needs fulfilled)]. Average hospital bed-days in the previous month fell from 3.50 to 1.68, comparing baseline and 1 month (p < 0.05). At 3 months, caregiver strain was significantly reduced (r = 0.332), while spiritual well-being was enhanced (r = 0.333). Significance After receiving 3 month's LRP services, patients with end-stage NMCDs and their caregivers experienced significant improvements in the quality of life and well-being, and their hospital bed-days were reduced.

Cultural Adaptation and Validation of the Quality of Dying in Long-Term Care Scale (QoD-LTC) for Spanish Nursing Homes.

Background: There is a need for instruments that can evaluate the psychosocial quality of dying in nursing homes. The aim of this study was to adapt and validate the Quality of Dying in Long-Term Care scale (QoD-LTC) to the Spanish context. Methods: Descriptive cross-sectional study. Fourteen nurses from 7 facilities in southern Spain assessed 153 residents who died in the centers; validity, reliability, and feasibility were evaluated. Results: The Spanish version consists of 11 items with acceptable reliability (α = 0.681). Three factors model was validated by principal components analysis. A mean of 180.62 (SD = 86.66) seconds is needed to fill it in. An inter-observer 0.753 (95% CI: 0.391–0.900, p< 0.001) and intra-observer 0.855 (95% CI: 0.568–0.951 p = 0.001) reliability were observed. Weak correlation was observed; positive with mono-item question (0.322) and negative with Eastern Cooperative Oncology Group (ECOG) with a value of (−0.321) and Integrated Palliative outcome scale (IPOS) with a value of (−0.252). Conclusions: The QoD-LTC scale presents an adequate factorial structure, internal consistency, and feasibility to evaluate psychosocial quality of dying in nursing homes. It can be used as a quality indicator.

Empowering families facing end-stage nonmalignant chronic diseases with a holistic, transdisciplinary, community-based intervention: 3 months outcome of the Life Rainbow Program.

Families facing end-stage nonmalignant chronic diseases (NMCDs) are presented with similar symptom burdens and need for psycho-social-spiritual support as their counterparts with advanced cancers. However, NMCD patients tend to face more variable disease trajectories, and thus may require different anticipatory supports, delivered in familiar environments. The Life Rainbow Programme (LRP) provides holistic, transdisciplinary, community-based end-of-life care for patients with NMCDs and their caregivers. This paper reports on the 3-month outcomes using a single-group, pre-post comparison. Patients with end-stage NMCDs were screened for eligibility by a medical team before being referred to the LRP. Patients were assessed at baseline (T0), 1 month (T1), and 3 months (T2) using the Integrated Palliative Outcome Scale (IPOS). Their hospital use in the previous month was also measured by presentations at accident and emergency services, admissions to intensive care units, and number of hospital bed-days. Caregivers were assessed at T0 and T2 using the Chinese version of the Modified Caregiver Strain Index, and self-reported health, psychological, spiritual, and overall well-being. Over-time changes in outcomes for patients, and caregivers, were tested using paired-sample t-tests, Wilcoxon-signed rank tests, and chi-square tests. Seventy-four patients and 36 caregivers participated in this research study. Patients reported significant improvements in all IPOS domains at both 1 and 3 months [ranging from Cohen's d = 0.495 (nausea) to 1.793 (depression and information needs fulfilled)]. Average hospital bed-days in the previous month fell from 3.50 to 1.68, comparing baseline and 1 month (p < 0.05). At 3 months, caregiver strain was significantly reduced (r = 0.332), while spiritual well-being was enhanced (r = 0.333). After receiving 3 month's LRP services, patients with end-stage NMCDs and their caregivers experienced significant improvements in the quality of life and well-being, and their hospital bed-days were reduced.

Factors influencing spiritual well-being in terminally ill cancer inpatients in Japan.

Spiritual well-being is very important in patients undergoing palliative care. Although psychosocial factors have been suggested to be associated with spiritual well-being, the relationship between physical signs and spiritual well-being has not been fully elucidated. The aim of this study was to explore diverse factors associated with spiritual well-being among palliative care patients in Japan. This study is a secondary analysis of a multicenter prospective cohort study involving patients admitted to palliative care units in Japan. Physicians recorded all data prospectively on a structured sheet designed for the study. The spiritual well-being score was measured using the Integrated Palliative Outcome Scale after patients' death in regard to symptoms over the previous 3 days. We classified each patient into "better" score (0-1) and "worse" score (2-4) groups and examined diverse factors associated with spiritual well-being. Among the 1896 patients enrolled, 1313 were evaluated. In the multivariate analysis, seven variables were significantly associated with "worse" score: worse spiritual well-being on admission (2-4) (p < 0.0001), younger age (< 80) (p = 0.0001), hyperactive delirium over 3 days before death (mild/moderate/severe) (p = 0.0001), expressed wish for hastened death (yes) (p = 0.0006), worse communication among patients and families (Support Team Assessment Schedule score 2-4) (p = 0.0008), pleural effusion (present) (p = 0.037), and marital status (unmarried) (p = 0.0408). Recognizing factors associated with spiritual well-being is potentially useful for identifying high-risk groups with lower spiritual well-being at the end of life. Further study is required to investigate factors associated with patient-reported spiritual well-being.

Selection criteria to palliative care implementation in advanced heart failure

Early palliative care (PC) integration in advanced and end-stage heart failure has shown to improve quality of life and spiritual well-being and to reduce physical symptoms. Barriers to implementation exist: perception that PC is opposite to "life-prolonging" therapies or is involved only in cancer disease and in end of life, prognostic difficulties in advanced heart failure, comorbidities, discrepancy between patient-reported symptom burden and objective measures of disease severity. This is why it is necessary to focus on patient and caregivers "needs" instead of exclusively numerical-objective measures, in order to emphasize clinical but also psychological, assistential and spiritual elements contributing to quality of life. The most appropriate instruments are "patient-reported outcome measures" (PROMs) or, better, "patient-centered outcome measures" (PCOMs), such as the Needs Assessment Tool: Progressive Disease-Heart Failure (NAT: PD-HF), Integrated Palliative Outcome Scale (IPOS), NECPAL and Supportive and Palliative Care Indicators Tool (SPICT). Finally, it is important to recognize triggers to initiate a PC approach (important changes in disease trajectory, difficult or refractory symptoms, frequent defibrillator shocks or transplant/mechanical support prevision, functional capacity decline, severe comorbidities, communication needs also for advanced care planning).

Psychometric properties of the Czech Integrated Palliative Outcome Scale: reliability and content validity analysis

BackgroundOutcome measurement is an essential part of the evaluation of palliative care and the measurements need to be reliable, valid and adapted to the culture in which they are used. The Integrated Palliative Outcome Scale (IPOS) is a widely used tool for assessing personal-level outcomes in palliative care. The aim of this study was to provide Czech version of IPOS and assess its psychometric properties.MethodsPatients receiving palliative care in hospice or hospitals completed the IPOS. The reliability of Czech IPOS was tested with Cronbach alpha (for internal consistency), the intraclass correlation coefficient for total IPOS score and weighted Kappa (for test-retest reliability of individual items). Factor analysis was used for elucidating the construct (Exploratory Factor Analysis). Convergent validity was tested with correlation analysis (Spearman correlation) in a part of the sample, who completed also the Edmonton Symptom Assessment System (ESAS) and the Palliative Performance Scale (PPS).ResultsThe sample consisted of 140 patients (mean age 72; 90 women; 81% oncological disease). The Cronbach alpha was 0.789; intraclass correlation was 0.88. The correlations of IPOS with ESAS was R = 0.4 and PPS R = − 0.2. Exploratory factor analysis revealed a 2-factor solution on our data. The first factor covers emotional and information needs and the second factor covers physical symptoms.ConclusionCzech IPOS has very good reliability regarding both internal consistency and test-retest reliability. Together with an item analysis results, we can conclude that the Czech adaptation of the tool was successful. The convergent validity needs to be assessed on the larger sample and the proposed 2-factor internal structure of the questionnaire has to be confirmed by using CFA.

Identifying the need for specialized palliative care in adult cancer patients \u2013 development and validation of a screening procedure based on proxy assessment by physicians and filter questions

BackgroundOne challenge in caring for cancer patients with incurable disease is the adequate identification of those in need for specialized palliative care (SPC). The study’s aim was to validate an easy to use phenomenological screening tool.MethodsThe German tool is based on the National Comprehensive Cancer Network (NCCN) Palliative Care guidelines and contains ten items in five domains that focus e.g. on diagnosis, functional status, complications, comorbidities, and palliative care relevant problems such as symptom management, distress, and support of family and team members. Sum score ranges from 0 to 14 (no need to great need). Assessment to identify SPC needs was done in university hospital wards between 1 and 08/2017 by health care professionals on admission of the patient if the disease was incurable and expected prognosis < 12 months. The Integrated Palliative Outcome Scale (IPOS, staff version), an outcome assessment instrument for palliative care that consists of ten items, served as external criterion; in sub samples inter-rater/test-retest were performed.ResultsData from 208 patients with incurable disease and life expectancy < 12 months (54.8% female; average age 63.5 years, range 21–96) were assessed using the tool. The tool has good convergent validity; the correlation between the sum scores of IPOS and our tool showed a significant and substantial effect. The sum score was independent of the patient’s age, gender and primary diagnosis. Patients who already were in contact with SPC had significantly higher screening scores than patients without. With a cut point of ≥ 5, 80.8% of the screened patients were in need for SPC. Cronbach’s alpha was α = .600. Rater agreement (inter-rater, test-retest) varied between single items. Correlation coefficients showed significant substantial effects.ConclusionsThis is the first validation of a screening procedure in German language identifying SPC needs of adult patients with advanced cancer and the first using filter questions as a pre-screening. Proxy assessment of SPC needs by physicians in cancer care settings is feasible and the suggested tool presents a valid instrument to trigger a PC consultation.Trial registrationThe study was not registered.

Symptom dimensions in people affected by long-term neurological conditions: a factor analysis of a patient-centred palliative care outcome symptom scale

Long-term neurological conditions (LTNCs) often cause debilitating symptoms. Better understanding of symptom dimensions in LTNCs is needed to support health professionals and improve care. This can be achieved by exploring the factor structure of a standardised measure of symptoms in LTNC patients. The symptom subscale of the Integrated Palliative Outcome Scale for LTNCs (IPOS Neuro-S24) comprises 24 items measuring symptom severity. Descriptive statistics and psychometric properties of the scale were assessed, followed by differential item functioning (DIF), exploratory factor analysis (EFA) and confirmatory factor analysis (CFA). Data from N = 238 patients were analysed. The mean IPOS Neuro S-24 score was 27.0 (possible range 0–96) and floor effects were found for 21 items. The scale had good internal consistency (Cronbach’s alpha = 0.77). Weak evidence of DIF was found for nine items. All but one item (falls) loaded onto four factors with loadings > 0.3. The factors represented four clinically meaningful symptom dimensions: fatigue, motor symptoms, oral problems and non-motor symptoms. We identified a reliable four-factor structure of symptom experience in LTNC patients. The results suggest that symptom dimensions are common across LTNCs. The IPOS Neuro S-24 is an appropriate tool to measure symptoms in LTNC patients, which may improve care.

Translation and cognitive testing of the Italian Integrated Palliative Outcome Scale (IPOS) among patients and healthcare professionals.

BackgroundOutcome measurement is fundamental to assess needs and priority of care in palliative care settings. The Integrated Palliative care Outcome Scale (IPOS) was developed from earlier versions of this tool. Its use is encouraged to ameliorate the assessment of individual outcomes in palliative care settings. This study aimed to translate and culturally adapt IPOS into Italian, and explore its face and content validity.MethodsAfter forward-backward translation, a qualitative study explored the views of and cognitive processes used by respondents. We conducted individual semi structured interviews with 21 patients admitted to two palliative care services, from hospitals, hospices and the community, and focus groups with 12 professionals working in multidisciplinary palliative care teams and used thematic analysis. The results were integrated in a final audit, including the project team and the original POS developers, to refine the final format of the tool.ResultsWe conducted 21 face to face cognitive interviews with patients, and 2 focus groups with 14 professionals. Patients and professionals felt content and format of IPOS appropriate and feasible, and not burdensome. Some layout problems were raised leading to adaptation. Main issues regarded: clarifying the meaning of choices and some cultural interpretation of some questions and response options and interpretation of some instructions. We proposed using some new terms as more appropriate and comprehensive in our context, such as replacing the term “family” with “dear ones”. The items that appeared unchanged from the previously validated Italian POS were left unmodified to maintain coherence.ConclusionsThe Italian IPOS, in its four versions directed to patients or staff and with a recall period of 3 or 7 days, has face and content validity for use in clinical settings and is ready for further psychometric and clinimetric validation.