Palliative Care Outcome Research Articles

Symptom Control and Survival for People Severely ill With COVID: A Multicentre Cohort Study (CovPall-Symptom).

Evidence of symptom control outcomes in severe COVID is scant. To determine changes in symptoms among people severely ill or dying with COVID supported by palliative care, and associations with treatments and survival. Multicentre cohort study of people with COVID across England and Wales supported by palliative care services, during the pandemic in 2020 and 2021. We analysed clinical, demographic and survival data, symptom severity at baseline (referral to palliative care, first COVID assessment) and at three follow-up assessments using the Integrated Palliative care Outcome Scale - COVID version. We included 572 patients from 25 services, mostly hospital support teams; 496 (87%) were newly referred to palliative care with COVID, 75 (13%) were already supported by palliative care when they contracted COVID. At baseline, patients had a mean of 2.4 co-morbidities, mean age 77 years, a mean of five symptoms, and were often bedfast or semiconscious. The most prevalent symptoms were: breathlessness, weakness/lack of energy, drowsiness, anxiety, agitation, confusion/delirium, and pain. Median time in palliative care was 46 hours; 77% of patients died. During palliative care, breathlessness, agitation, anxiety, delirium, cough, fever, pain, sore/dry mouth and nausea improved; drowsiness became worse. Common treatments were low dose morphine and midazolam. Having moderate to severe breathlessness, agitation and multimorbidity were associated with shorter survival. Symptoms of COVID quickly improved during palliative care. Breathlessness, agitation and multimorbidity could be used as triggers for timelier referral, and symptom guidance for wider specialities should build on treatments identified in this study.

Palliative care needs and symptom burden in younger and older patients with end-stage renal disease undergoing maintenance hemodialysis: A cross-sectional study

ObjectivesTo investigate the current situation of palliative care needs and the symptom burden in patients with end-stage renal disease (ESRD) undergoing maintenance hemodialysis (MHD), and to explore whether there are differences between younger and older patients. MethodsThis cross-sectional study was conducted in the hemodialysis centers of two tertiary hospitals from November 2021 to June 2022. Participants were selected by convenience sampling. Socio-demographics, clinical characteristics, the Palliative Care Outcome Scale (POS), the Dialysis Symptom Index (DSI), and health-related quality of life (EQ-5D-3L) were used for evaluation. Descriptive statistics, between-group comparisons, and correlation analysis were used to analyze the data. ResultsA total of 236 patients were enrolled, including 118 younger and 118 older patients. The total median (P25, P75) POS score was 16.0 (12.0, 23.0), and the score was higher in older patients (P < 0.01). The mean total number of symptoms in MHD patients was 15.04 ± 5.06, and the overall median symptom severity score was 59.0 (52.0, 71.0); these scores were higher in the older group (P < 0.01). The most common symptom was dry mouth (91.5%), followed by itching (83.1%), and dry skin (82.2%). Additionally, palliative care needs were significantly associated with symptom burden and health-related quality of life (HRQOL). ConclusionsThe results showed that patients with ESRD undergoing MHD have a significant symptom burden and moderate palliative care needs, which are more severe in older patients. Therefore, interdisciplinary teams should be formed to actively manage patients’ symptoms and meet the physical, psychological, social, and spiritual needs related to palliative care to improve patients’ HRQOL.

Palliative Care Outcome Scale Assessment for Cancer Patients Eligible for Palliative Care: Perspectives on the Relationship between Patient-Reported Outcome and Objective Assessments.

(1) Background: The importance of patient-reported outcome (PRO), i.e., prioritizing patient voice, has increased in cancer treatment, as well as palliative and supportive settings. The Integrated Palliative Care Outcome Scale (IPOS), a hybrid evaluation consisting of “patient evaluation” (PRO) and “peer evaluation” by medical professionals, was developed as a successor version of the Support Team Assessment Schedule (STAS) in 2013 and has been utilized worldwide. The Japanese version of the IPOS (IPOS-J) was developed and released in 2019. The purpose of this study was to explore the applicability of the IPOS-J to clinical practice in the future. (2) Methods: We conducted the following two studies with terminally ill cancer patients: (i) Can an evaluation with the IPOS-J performed by medical professionals (peer evaluation) replace the STAS-J evaluation? (ii) Can the quality of palliative care improve by combining the IPOS-J patient evaluation with the peer evaluation? (3) Results: The overall intervention rate and urgent intervention rate for the STAS-J and IPOS-J was 34.4 vs. 34.1% (p = 0.91) and 10.4 vs. 9.9% (p = 0.78), respectively. The patients selected “intervention required” but the medical professionals selected “no intervention required” in 47 cases. The medical team performed appropriate intervention after re-assessment. As a result, more than 70% of the patients were “intervention-free” after 1 week of intervention. (4) Conclusions: The IPOS-J peer evaluation was as useful as the STAS-J evaluation. A hybrid type of evaluation, combining patient evaluation (PRO) and peer evaluation, may help us to understand patient needs and improve the quality of palliative care.

Regional collaborative home-based palliative care and health care outcomes among adults with heart failure.

BackgroundInnovative models of collaborative palliative care are urgently needed to meet gaps in end-of-life care among people with heart failure. We sought to determine whether regionally organized, collaborative, home-based palliative care that involves cardiologists, primary care providers and palliative care specialists, and that uses shared decision-making to promote goal- and need-concordant care for patients with heart failure, was associated with a greater likelihood of patients dying at home than in hospital.MethodsWe conducted a population-based matched cohort study of adults who died with chronic heart failure across 2 large health regions in Ontario, Canada, between 2013 and 2019. The primary outcome was location of death. Secondary outcomes included rates of health care use, including unplanned visits to the emergency department, hospital admissions, hospital lengths of stay, admissions to the intensive care unit, number of visits with primary care physicians or cardiologists, number of home visits by palliative care physicians or nurse practitioners, and number of days spent at home.ResultsPatients who received regionally organized, collaborative, home-based palliative care (n = 245) had a 48% lower associated risk of dying in hospital (relative risk 52%, 95% confidence interval 44%–66%) compared with the matched cohort (n = 1172) who received usual care, with 101 (41.2%) and 917 (78.2%) patients, respectively, dying in hospital (number needed to treat = 3). Additional associated benefits of the collaborative approach included higher rates of clinician home visits, longer time to first hospital admission, shorter hospital stays and more days spent at home.InterpretationAdoption of a model of regionally organized, collaborative, home-based palliative care that uses shared decision-making may improve end-of-life outcomes for people with chronic heart failure.

Evaluation of the SUCCESS Health Literacy App for Australian Adults With Chronic Kidney Disease: Protocol for a Pragmatic Randomized Controlled Trial.

BackgroundWe developed a smartphone app—the SUCCESS (Supporting Culturally and Linguistically Diverse CKD Patients to Engage in Shared Decision-Making Successfully) app—to support Australian adults with kidney failure undertaking dialysis to actively participate in self-management and decision-making. The content of the SUCCESS app was informed by a theoretical model of health literacy that recognizes the importance of reducing the complexity of health information as well as providing skills necessary to access, understand, and act on this information.ObjectiveThe purpose of this study is to investigate the efficacy of the SUCCESS app intervention.MethodsWe designed a multicenter pragmatic randomized controlled trial to compare the SUCCESS app plus usual care (intervention) to usual care alone (control). A total of 384 participants receiving in-center or home-based hemodialysis or peritoneal dialysis will be recruited from six local health districts in the Greater Sydney region, New South Wales, Australia. To avoid intervention contamination, a pragmatic randomization approach will be used for participants undergoing in-center dialysis, in which randomization will be based on the days they receive hemodialysis and by center (ie, Monday, Wednesday, and Friday or Tuesday, Thursday, and Saturday). Participants undergoing home-based dialysis will be individually randomized centrally using simple randomization and two stratification factors: language spoken at home and research site. Consenting participants will be invited to use the SUCCESS app for 12 months. The primary endpoints, which will be assessed after 3, 6, and 12 months of app usage, are health literacy skills, evaluated using the Health Literacy Questionnaire; decision self-efficacy, evaluated using the Decision Self-Efficacy Scale; and rates of unscheduled health encounters. Secondary outcomes include patient-reported outcomes (ie, quality of life, evaluated with the 5-level EQ-5D; knowledge; confidence; health behavior; and self-management) and clinical outcomes (ie, symptom burden, evaluated with the Palliative care Outcome Scale–Renal; nutritional status, evaluated with the Patient-Generated Subjective Global Assessment; and intradialytic weight gain). App engagement will be determined via app analytics. All analyses will be undertaken using an intention-to-treat approach comparing the intervention and usual care arms.ResultsThe study has been approved by Nepean Blue Mountains Human Research Ethics Committee (2020/ETH00910) and recruitment has begun at nine sites. We expect to finalize data collection by 2023 and publish the manuscript by 2024.ConclusionsEnhancing health literacy skills for patients undergoing hemodialysis is an important endeavor, given the association between poor health literacy and poor health outcomes, especially among culturally diverse groups. The findings from this trial will be published in peer-reviewed journals and disseminated at conferences, and updates will be shared with partners, including participating local health districts, Kidney Health Australia, and consumers. The SUCCESS app will continue to be available to all participants following trial completion.Trial RegistrationAustralia New Zealand Clinical Trials Registry (ANZCTR) ACTRN12621000235808; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=380754&isReview=trueInternational Registered Report Identifier (IRRID)DERR1-10.2196/39909

Improving Access and Health Outcomes in Palliative Care through Cultural Competence: An exploration of opportunities and challenges in India.

People who belong to ethnic, racial and cultural minorities often have less access to healthcare and have poorer health outcomes when compared to the majority population. In the COVID pandemic, too, health disparities have been observed. Similar disparities have been noted in patients with advanced disease and suffering from pain, with minority patients having less access to or making less use of palliative care. In the US, a range of solutions has been proposed to address the issue of inequality in access to healthcare, with cultural competence figuring prominently among them. This study explores whether and how cultural competence may be applied to palliative care in India to improve access and health outcomes. In the literature, it is argued that, in diverse societies, cultural competence is an essential part of the solution towards equitable healthcare systems. Solutions to problems of healthcare disparities must go beyond an increase in financial resources as more financial resources will not necessarily make the healthcare system more equitable. A culturally competent system recognises and integrates at all levels the culture as a significant component of care, which is particularly relevant at the end of life. If efficiently implemented, cultural competence will lead to higher patient satisfaction, better follow-up and patient compliance and an improved reputation of palliative care among minorities. This may help to reduce inequalities in access and health outcomes in palliative care.

Patient-centered perinatal palliative care: family birth plans, outcomes, and resource utilization in a diverse cohort

Perinatal palliative care is an emerging concept in fetal medicine that offers quality-of-life options and anticipatory grief management for families of fetuses with complex conditions. Few perinatal palliative care outcomes are detailed in peer-reviewed literature. This study aimed to describe outcomes of perinatal palliative care at the Fetal Center of the University of Texas Health Science Center at Houston and Women's Center at Children's Memorial Hermann Hospital. This was a retrospective cohort of families receiving perinatal palliative care for life-limiting fetal diagnosis, such as trisomy 13 or 18 and some major structural anomalies between 2016 and 2020. The primary outcome was whether delivery events matched families' birth plans, including fetal/neonatal clinical course matching expectations described by consultant notes. Secondary outcomes included maternal safety outcomes, use of perinatal interventions, delivery outcomes, and resource utilization outcomes. Of 187 perinatal palliative care consults, delivery events matched families' plans and clinicians' expectations in 89% of cases (165/185); 39% (73/187) of families requested some perinatal interventions, 64% of whom planned postnatal comfort care even while choosing antenatal interventions. Demographics and median income were similar between families who chose some interventions and those who chose comfort care. Patients choosing any interventions had more mismatches between their plans and delivery events (19% vs 2%; P<.001), were more likely to change their plans (24% vs 6%; P=.001), and unsurprisingly used more healthcare resources. They were also more likely to have intraamniotic infection or postpartum hemorrhage (9% vs 22%; P=.02), but this was associated with mode of delivery and not choice of interventions. Most families' perinatal experiences matched birth plans and expectations in this perinatal palliative care program. Families who desired interventions used more healthcare resources, but often did so with plans for postnatal comfort care, demonstrating insight into neonatal prognosis but achieving value-consistent goals, such as meeting a live neonate. Perinatal palliative care was safe for maternal patients and equitable across racial, ethnic, and income groups. Perinatal palliative care and some perinatal interventions are options for care of the whole family in complex fetal medicine cases.

The association between socioeconomic position and the symptoms and concerns of hospital inpatients seen by specialist palliative care: Analysis of routinely collected patient data

Background: Understanding how socioeconomic position influences the symptoms and concerns of patients approaching the end of life is important for planning more equitable care. Data on this relationship is lacking, particularly for patients with non-cancer conditions. Aim: To analyse the association between socioeconomic position and the symptoms and concerns of older adult patients seen by specialist palliative care. Design: Secondary analysis of cross-sectional, routinely collected electronic patient data. We used multivariable linear regression with robust standard errors, to predict scores on the three subscales of the Integrated Palliative care Outcome Scale (IPOS; physical symptoms, emotional symptoms and communication and practical concerns) based on patient level of deprivation, measured using Index of Multiple Deprivation. Setting/participants: Consecutive inpatients aged 60 years and over, seen by specialist palliative care at two large teaching hospitals in London between 1st January 2016 and 31st December 2019. Results: Seven thousand eight hundred and sixty patients were included, 38.3% had cancer. After adjusting for demographic and clinical characteristics, patients living in the most deprived areas had higher (worse) predicted mean scores on the communication and practical subscale than patients living in the least deprived areas, 5.38 (95% CI: 5.10, 5.65) compared to 4.82 (4.62, 5.02) respectively. This effect of deprivation diminished with increasing age. Deprivation was not associated with scores on the physical or emotional symptoms subscales. Conclusions: Targetting resources to address practical and communication concerns could be a strategy to reduce inequalities. Further research in different hospitals and across different settings using patient centred outcome measures is needed to examine inequalities.

Assessment of symptom intensity and psychological well-being of patients with advanced cancer undergoing palliative care in a Brazilian public hospital: A cross-sectional study.

The characterization of clinical-emotional aspects of advanced cancer patients is essential for palliative care. To date, there is scarce information regarding the socio-demographic and clinical profiles, as well as the quality of care given to hospitalized patients under this condition, particularly in South American countries. The objectives of this study were to analyze the socio-demographic profile, symptoms (including psychological well-being), and the quality of life of advanced cancer patients admitted to the oncology ward of the General Hospital of the University of Campinas, Brazil. In this cross-sectional study, patients were invited to fill the selected questionnaires such as Edmonton Symptom Assessment Scale (ESAS) and Palliative Care Outcome Scale (POS). Descriptive analyses were performed, regarding socio-demographic profile, symptoms, level of information over treatment aims, and quality-of-life scores. Fifty-nine patients were included, of whom 29 were male and 30 female, with a mean age of 58 years. Overall, 31.9% presented pain at the time of the interview, 52.5% depression, and 76.3% anxiety. The median individual scores for ESAS and POS (and interquartile range) were, respectively, 27 (17-41) and 14 (9-19). Patients with previous knowledge of treatment objectives reported worse depression scores in the ESAS (median 2 vs. 0, p 0.02), even when correcting for possible confounders. In contrast to current literature, in which pain is a prevalent report, depression and anxiety were more evident in this specific population of hospitalized patients. This framework reflects the need for valuing not only physical but also emotional symptoms to achieve the integrality of care.

Consuming Health Information and Vulnerable Populations: Factors of Engagement and Ongoing Usage.

To summarise the state of the art during the year 2021 in consumer health informatics and education, with a special emphasis on "Inclusive Digital Health: Addressing Equity, Literacy, and Bias for Resilient Health Systems". We conducted a systematic search of articles published in PubMed using a predefined set of queries. In order to build queries, we have used a common understanding of digital inclusion. Leaving no one behind in the digital age requires not only reaching the most vulnerable populations, but also those people and population groups that are not digitally literate. It implies appropriate access, digital skills, and usability and navigability aspects in the development of technological solutions. Thus, we identified 126 potential articles for review. These articles were screened according to topic relevance and 13 were selected for consideration of best paper candidates, which were then presented to a panel of international experts for full paper review and scoring. The top five papers were discussed in a consensus meeting. Four papers received the highest score from the expert panel, and these papers were selected to be representative papers on consumer informatics for exploring inclusive digital health in the year 2021. Bibliometrics analysis conducted on words found in abstracts of the candidate papers revealed five clusters of articles, where the clustering outcomes explained 93.58% of the dispersion. The first cluster analysed the use of mobile apps to improve quality of communications between racial subgroups (e.g., Black patients and their family members) and healthcare professionals, and reduce racial disparities in core palliative care outcomes. The second cluster revealed studies reporting health literacy and experience of patients with specific diseases or impairments (e.g., type 2 diabetes, asthma and deaf people). The third focused assessing the effectiveness of interactive social media interventions on changing health behaviors, health outcomes and health equity in the adult population. The fourth targeted people with limited health literacy, as well as potentially disadvantaged or marginalized groups (people with cerebrovascular or cancer problems, students with mental problems, African American Young adults), and explored how social media may help reduce health disparities and improve health outcomes. The last explored health literacy levels among groups who experience difficulties with health service engagement and retention (patients with cancer or lay consumers of online disease information). Although the query was built to address consumer inclusiveness and digital health, without specifying any health status or disease, COVID-19 was the topic in a lot of retrieved papers. Beyond the classic health issues targeted by social media (e.g., influencing health behaviors, from smoking and diet adherence to preventative screening and exercise habits), the pandemic has exposed many situations of vulnerability and health inequality. There is universal agreement on the necessity of a healthcare policy that addresses issues of gender, age, sexual orientation, and different cultures to ensure health equity for all, regardless of age or resources available. The place of digital health is studied both as a solution and a possible factor of accentuating healthcare disparities, inequalities, and exclusions. Healthcare providers should implement a digital health literacy plan to make sure health information technology is an option for everyone. Public health policies and health promotion strategies must focus on strengthening and adapting the digital health literacy in known vulnerable subgroups (ethnic and racial minorities, sexual and gender minorities, children and adolescents, elderly people, students population, impaired people, patients with cancer and chronic diseases) increasing citizen technology engagement and guaranteeing equity in access to information and in the skills to manage, discriminate, and apply information to health.

Factors affecting acceptance of palliative care in mainland China: a national cross-sectional study

China ranks 53rd in the list of 81 countries included in the Quality of Death and Dying Index 2021. Cancer is one of the leading causes of death in China. Although the country is highly burdened with cancer, with 4·5 million new diagnoses and more than 3 million cancer deaths in 2020 alone, palliative care services in mainland China are extremely scarce. The aim of this study was to investigate the attitudes of people towards palliative and hospice care, and to analyse the associations between attitudes and potential explanatory variables. A survey was done between July 10, 2021, and Sept 15, 2021. We used a multistage sampling strategy to recruit participants from 120 cities across mainland China. The questionnaire aimed to assess the willingness of respondents to receive palliative care. Survey data were analysed by multiple stepwise linear regression to establish the factors associated with willingness to receive palliative care. Sex, education level, possession of a house, perceived anxiety on the Generalised Anxiety Disorder Assessment scale, perceived pressure, social support (evaluated through the Perceived Social Support Scale), family health (evaluated through the Short-Form Family Health Scale), health literacy (evaluated through the Short-Form Health Literacy Questionnaire), personal sense of health (evaluated through the EuroQol Visual Analogue Scale), self-reported quality of life and sense of health (evaluated trough the EuroQol Five Dimensions Questionnaire), and access to medical insurance were analysed as potential explanatory variables affecting acceptance of palliative care. Standardised regression coefficients (β) were used in multiple stepwise linear regression to reflect the effect of variables on the results. 11 031 respondents completed the survey. The average willingness to accept palliative care was scored at 65·02 points in a visual analogue scale of 0-100 points. Men (β=-0·02) were more likely than women to decline having palliative care. Respondents holding a bachelor's degree or higher (β=0·04), owning more residential properties (two: β=0·02; three or more houses: β=0·01), self-reporting mild perceived anxiety (β=0·03), higher perceived pressure (moderate pressure: β=0·05; severe pressure: β=0·06), or higher scores on the Perceived Social Support Scale (β=0·10), the Short-Form Family Health Scale (β=0·12), the Short-Form Health Literacy Questionnaire (β=0·16), the EuroQol Visual Analogue Scale (β=0·21), the EuroQol Five Dimensions Questionnaire (β=0·05), or with access to medical insurance providing higher reimbursement (employee health insurance and commercial health insurance: β=0·03; government insurance: β=0·04) were more willing to accept palliative care. Sex, house ownership, perceived anxiety, perceived pressure, social support on the Perceived Social Support Scale, and health literacy were the main affecting factors on Chinese residents' acceptance level and attitudes towards palliative care identified by this study, in which we discuss the public acceptance of palliative care on the basis of a nationwide sample from China. Despite some substantial reported outcomes in palliative care, the study is limited by reporting bias and selection bias. The scientific research project of Shaanxi Provincial Education Department, 2021 (grant 21JZ017), and Youth Project of Key Research Bases of Philosophy and Social Sciences in the Sichuan Province (grant YF22-Q13).

P69-1 Advantages of using patient-reported outcomes (PROs) during chemotherapy for esophageal cancer

Although patient-reported outcomes (PROs) are gaining greater importance, few efforts have been made to assess PROs in the late line treatment of esophageal cancer. Thus, we evaluated the usefulness of a novel assessment tool - Integrated Palliative care Outcome Scale (IPOS) - in these patients.

Strengthening Community End-of-Life Care through Implementing Measurement-Based Palliative Care.

The increasing demand for palliative care in New Zealand presents a potential threat to the quality of service delivery. One strategy to overcome this is through the implementation of valid and reliable patient-reported outcome measures. This mixed-methods study aimed to (1) implement measurement-based palliative care (MBPC) in a community palliative care service in Auckland, New Zealand; (2) evaluate the clinical utility of MBPC perceived by clinicians; (3) describe patient characteristics as measured by the Integrated Palliative Care Outcome Scale (IPOS), the Australasian Modified Karnofsky Performance Scale (AKPS), and Phase of Illness (POI); and (4) evaluate the internal consistency of the IPOS. Participants were over 18 years of age from a community outpatient palliative care service. In a phased approach to implementation, healthcare staff were educated on each instrument used for patient assessment. Uptake and internal consistency were evaluated through descriptive statistics. An interpretive descriptive methodology was used to explore the clinical utility of MBPC through semi-structured interviews with seven clinical staff members. Individual patient assessments (n = 1507) were undertaken predominantly on admission, with decreasing frequency as patients advanced through to the terminal phase of their care. Mean total IPOS scores were 17.97 (SD = 10.39, α = 0.78). The POI showed that 65% of patients were in the stable phase, 20% were in the unstable phase, 9% were in the deteriorating phase, and 2% were in the terminal phase. Clinicians reported that MBPC facilitated holistic and comprehensive assessments, as well as the development of a common interdisciplinary language. Clinicians expressed discomfort using the psychosocial and spiritual items. Measurement-based palliative care was only partially implemented but it was valued by staff and perceived to increase the quality of service delivery. Future research should determine the optimal timing of assessments, cultural responsivity for Māori and Pacific patients, and the role of MBPC in decision support for clinicians.

Factors influencing health-related quality of life in people with chronic kidney disease: A structural equation modelling approach.

To test whether the revised Wilson and Cleary model could identify which factors contribute to health-related quality of life in chronic kidney disease. Chronic kidney disease affects a person's health-related quality of life detrimentally although nursing practice informed by theory is only beginning to emerge. A cross-sectional study reported using the STROBE guidelines. About 886 participants with chronic kidney disease (varying grades) completed validated measures of symptoms (renal version of the Integrated Palliative care Outcome Scale), and general health perceptions and health-related quality of life (European Quality of Life five-dimension three-level). Socio-demographic and renal characteristics were also collected. Data were analysed using descriptive statistics and structural equation modelling. Biological function (decreased kidney function and haemoglobin and greater number of comorbidities), directly contributed to increased symptom burden. Symptoms demonstrated strong negative relationships with both general health perceptions and health-related quality of life. General health perceptions had a direct positive relationship with health-related quality of life. As age increased, health-related quality of life decreased. The only environmental characteristic of significance was the distance between home and hospital although it was not directly associated with health-related quality of life. Overall, the model explained approximately half of the deterioration in health-related quality of life. The model demonstrated how various factors influence alteration of health-related quality of life in people with chronic kidney disease. Early identification of these factors could assist nurses to introduce effective management strategies into patient care plans proactively. Comprehensive symptom assessment needs to occur not only in kidney failure but in earlier chronic kidney disease grades to enable timely interventions targeted at improving people's wellbeing. Validated interviewer administered questionnaires were completed by participants with chronic kidney disease in this study.

Face and content validity, acceptability, feasibility, and implementability of a novel outcome measure for children with life-limiting or life-threatening illness in three sub-Saharan African countries

Background: The Children’s Palliative Care Outcome Scale (C-POS) is the first measure developed for children with life-limiting and -threatening illness. It is essential to determine whether the measure addresses what matters to children, and if they can comprehend and respond to its items. Aim: To determine the face and content validity, comprehensiveness, comprehensibility, acceptability and feasibility, and implementability of the C-POS. Design: Mixed methods (1) Content validation: mapping C-POS items onto an evidence-based framework from prior evidence; (2) Comprehensiveness, comprehensibility, acceptability feasibility, and implementability: qualitative in-depth and cognitive interviews with a purposive sample of children and young people (n = 6), family caregivers (n = 16), and health workers (n = 12) recruited from tertiary facilities in Kenya, South Africa, and Uganda. Results: (1) C-POS content mapped on to palliative care domains for (a) children (i.e. physical (e.g. symptoms), social (e.g. play/socialize), psychological (e.g. happy)) and (b) families (i.e. psychological (e.g. worry), social (e.g. information), and help and advice). (2) C-POS items were well understood by children and their caregivers, acceptable, and relevant. Completion time was a median of 10 min, patients/caregivers and health workers reported that using the C-POS improved their communication with children and young people. Methodological and content issues included: (i) conceptual gap in the spiritual/existential domain; (ii) further consideration of developmental, age-appropriate items in the social and psychological domains, and (iii) linguistic complexity and difficulty in proxy rating. Conclusion: C-POS items capture the core symptoms and concerns that matter to children and their families. C-POS is feasible, comprehensible, and acceptable for use in clinical settings; areas for further development and improvement are identified.

Evaluating Caregiver Involvement and Outcomes in Community-Based Palliative Care Randomized Control Trials: A Systematic Review (GP759)

Evaluating Caregiver Involvement and Outcomes in Community-Based Palliative Care Randomized Control Trials: A Systematic Review (GP759)

Symptoms and psychosocial distress associated with malignant wounds: Secondary analysis of a prospective cohort study.

e24008 Background: Symptoms associated with malignant wounds (MWs) worsen a patient's quality of life. However, MWs’ impact on psychosocial health and end-of-life status is unknown. Methods: This is a secondary analysis of the results of a large prospective cohort study conducted in 23 palliative care units in Japan. Consecutive patients were enrolled and followed up until their death or for six months. Patient demographics, symptom burden, medication use, and MW status were documented on admission. Healthcare professionals rated the symptoms using the Integrated Palliative care Outcome Scale (IPOS), a 5-point Likert scale. Quality of death (QOD) was evaluated at death using the Good Death Scale (GDS). The primary outcome was the prevalence of severe psychological symptom burden, evaluated as an IPOS-feeling score of 2–4. Factors that affected psychological symptoms and their relationship with GDS were also investigated. Results: Among the 1896 enrolled patients, 156 (8.2%) had MWs. MWs predominantly affected females and younger patients, and the most common primary sites were the breast (28.2%) and head and neck (19.2%). Among the patients with MWs, 75 (50.3%), 59 (39.6%), and 42 (28.2%) had exudate, pain, and bleeding, respectively. Among the 32 patients with MWs requiring dressing change at least twice a day and 117 patients with MWs requiring dressing change less than once a day, 20 (62.5%) and 44 (37.6%) had an IPOS-feeling score of 2–4, respectively (p = .015). Patients with MWs required antidepressants and opioids more frequently and received higher doses of opioids. Between the patients with and without MW, there were significant differences in IPOS-feeling and pain scores but not in breathlessness, fatigue, anorexia, somnolence, or dry mouth scores. IPOS-feeling and pain scores were worse in patients with MWs. Patients without MWs did not have better GDS scores (p = .48). Conclusions: Patients with MWs frequently required antidepressants and opioids, suggesting an increased prevalence of depression and severe pain. Psychological distress was influenced by the frequency of dressing changes. The presence of MWs did not affect the QOD.[Table: see text]

A Multi-Centre COVID-19 Study Examining Symptoms and Medication Use in the Final Week of Life.

ContextGuidelines exist to direct end-of-life symptom management in COVID-19 patients. However, the real-world symptom patterns, and degree of concordance with guidelines on medication use, and palliative care involvement has received limited attention.ObjectivesTo describe the evolution of COVID-19 symptoms, medication used to alleviate these, and degree of palliative care involvement in the final week of life.MethodsThis retrospective study reviewed all COVID-19 inpatient deaths across five metropolitan hospitals in Australia from January 1 to December 31, 2020. Outcome measures were collected at day of death, and days one, two, five and seven before death. These were COVID-19 symptom severity (measured by the Palliative Care Outcome Scale), and use of supportive pharmacological and non-pharmacological therapies. Palliative care referral timepoint was also collected.ResultsWithin the sample of 230 patients, commonest symptoms were breathlessness, agitation, pain, and respiratory secretions. On day of death, 79% (n = 181) experienced at least one symptom, and 30% (n = 68) experienced severe/extreme symptoms. The use of midazolam, glycopyrrolate, and infusions for symptom management occurred late, less frequently, and at lower doses than suggested in guidelines and other studies. Palliative care referrals were made late, at median three days before death (IQR 1-6 days), and for only half of people dying from COVID-19 (51%; n = 118).ConclusionSymptoms peaked in final three days of life. Earlier use of in fusional and breakthrough medications should be considered in anticipation of symptoms given high likelihood of dying in discomfort. Earlier palliative care referral for high-risk patients should be considered at hospital admission.

Association Between Regionally Organized, Collaborative Home-Based Palliative Care and Healthcare Outcomes in Adults Who Died with Chronic Heart Failure: A Matched Cohort Study (GP717)

Association Between Regionally Organized, Collaborative Home-Based Palliative Care and Healthcare Outcomes in Adults Who Died with Chronic Heart Failure: A Matched Cohort Study (GP717)

Palliative Care Needs and Outcomes After Severe Acute Brain Injury: A Prospective Cohort Study (RP422)

Palliative Care Needs and Outcomes After Severe Acute Brain Injury: A Prospective Cohort Study (RP422)