Palliative Care Outcome Research Articles

Implementing clinic to home telehealth services to promote quality of life for ambulatory oncology palliative care patients.

259 Background: The Lifespan Cancer Institute (LCI) identified strategies to improve the palliative care experience and outcomes by providing clinic to home telehealth services. LCI is an integrated academic medical center program combining three hospital programs operating at five outpatient sites. One quality goal is to embed and increase palliative care within the fabric of oncology by providing palliative telehealth in the home to avoid office visits, ED and hospital admissions. Methods: LCI’s multidisciplinary palliative care team, including administrators, physicians, advanced practice providers and community partner physicians assessed telehealth challenges with a vulnerable patient in the home setting. Process development included operations, technology, patient and staff education. The group modified existing Lifespan system workflows, clinic to clinic video for behavioral health and clinic to clinic for providers, to create the clinic to home method. This process benchmarked patient and behavioral health noting video differences with the clinic setting versus the home. Results: Outcome metrics include no show rate, chemotherapy within 14 days of death, ED/ICU within 30 days of death, patient and provider experience. Initial data shows no show rates decreased from 10% (January) to 6% (May) as telehealth increased. Patients marked deceased within 3 months of a LCI visit for January (n = 52) and May ( = 61) unfortunately did not have a negative trend for chemotherapy in the last 14 days of life (Jan: 8%, May 15%). ED and ICU visits both had modest decreases from January (ED 50%, ICU 29%) to May (ED 48%, ICU 21%). In anticipation of future Press Ganey results, patient feedback includes an increase of comfort while at home. Provider satisfaction increased with the ability to assess the patient in their own home instead of the sterile clinic environment. Encountered challenges include insurance restrictions for Rhode Island (not a rural state), technology, and remote trouble shooting. Conclusions: The success of clinic-to-home telehealth services set the foundation for the COVID-19 telehealth insurgence and led to the palliative team acting as role models to medical and radiation oncology. End of life oncology patients stayed home while having their palliative needs addressed remotely. The innovative approach to implementing telehealth services will serve as a model for future LCI telehealth programs including treatment education sessions, oral chemotherapy follow-up, survivorship and post hospital discharge assessments.

Assessment of the quality of end-of-life care: translation and validation of the German version of the \u201cCare of the Dying Evaluation\u201d (CODE-GER) - a questionnaire for bereaved relatives

BackgroundInternational studies indicate deficits in end-of-life care that can lead to distress for patients and their next-of-kin.The aim of the study was to translate and validate the “Care of the Dying Evaluation” (CODE) into German (CODE-GER).MethodsTranslation according to EORTC (European Organisation for Research and Treatment of Cancer) guidelines was followed by data collection to evaluate psychometric properties of CODE-GER. Participants were next-of-kin of patients who had died an expected death in two hospitals. They were invited to participate at least eight, but not later than 16 weeks after the patient’s death. To calculate construct validity, the Palliative care Outcome Scale (POS) was assessed. Difficulty and perceived strain of answering the questionnaire were assessed by a numeric scale (0–10).ResultsOut of 1137 next-of-kin eligible, 317 completed the questionnaire (response rate: 27.9%). Data from 237 main sample participants, 38 interraters and 55 next-of-kin who participated for repeated measurement were analysed. Overall internal consistency, α = 0.86, interrater reliability, ICC (1) = 0.79, and retest-reliability, ICC (1, 2) = 0.85, were good. Convergent validity between POS and CODE-GER, r = −.46, was satisfactory. A principal component analysis with varimax rotation showed a 7-factor solution. Difficulty, M = 2.2; SD ± 2.4, and perceived strain, M = 4.1; SD ± 3.0, of completing the questionnaire were rather low.ConclusionThe results from the present study confirm CODE-GER as a reliable and valid instrument to assess the quality of care of the dying person. More over our study adds value to the original questionnaire by proposing a deepened analysis of obtained data. The development of seven subscales increases its potential for further surveys and research.Trial registrationThis study was registered retrospectively on the 25th of January 2018 at the German Clinical Trials Register (DRKS00013916).

Towards patient-centred cancer care: cross-cultural validity and responsiveness of the Turkish Integrated Palliative care Outcome Scale

BackgroundA valid measure to describe the most important needs and concerns of people with life-threatening illnesses is missing in Cyprus. Our aim was to adapt and test the cross-cultural validity and responsiveness of the Integrated Palliative care Outcome Scale (IPOS) in a cohort of Turkish speaking cancer patients.MethodsThe IPOS (English) patient-reported measure was translated into Turkish following published guidelines including, 2 independent forward, 2 independent blind backward translations, expert panel review by 7 members and field testing with 11 cognitive interviews (5 patients and 6 specialists) and final approval of the copyright holder. Consecutive cancer patients (n = 234) seen by the community palliative care services were recruited from Help Those with Cancer Society (KHYD); of those 82 were followed-up. The instrument was administered by personal interview. Confirmatory Factor Analysis was used to validate the factor structure of Turkish IPOS. Internal consistency reliability of the subscales was evaluated by Cronbach’s alpha and Intraclass Correlation Coefficient respectively. Validity was assessed by calculating Pearson’s correlation coefficient (r) between Turkish IPOS scores and Turkish version of EQ-5D-3L - a validated generic measure of health status developed by the EuroQol Group.ResultsTurkish IPOS is conceptually and semantically equivalent to the English version and linguistically valid. The CFA was inconclusive for the three factor structure due to low sample size, as the SRMR and CFI tests only approached the defined minimums warranting further investigation. There were low levels of missing values, and no ceiling or floor effects. The Physical (α = 0.91) and the Social and Quality of Care Issues (α = 0.75) sub-scales showed good internal consistencies, however Emotional sub-scale showed poor internal consistency (α = 0.64). The reliability of the Physical (ICC = 0.51, 0.45–0.56 95% CI) and Social Quality of Care Issues (ICC = 0.50, 0.42–0.57 95% CI) were moderate. Poor internal consistency (α =0.64) and reliability (ICC = 0.31, 0.24–0.39, 95% CI) was obtained for Emotional Subscale. Construct validity was evidenced through significant correlations in the predicted directions and strength with EQ-5D. Turkish IPOS showed higher needs and concerns in participants at more advanced stages than those at earlier stages of cancer. The standardized response mean (SRM) of − 0.94 suggested large internal responsiveness to clinical change.ConclusionTurkish IPOS is a clear, relevant, acceptable measure and responsive to the needs and concerns of cancer patients, observing regional differences, it may have implications for use in other Turkish speaking communities. Future studies are needed to clarify the factor structure, assess its external responsiveness and to improve the properties of its Emotional subscale.

1514P Patient-reported outcomes of early integration palliative care in quality of life and symptom burden in advanced lung cancer – A randomized study

1514P Patient-reported outcomes of early integration palliative care in quality of life and symptom burden in advanced lung cancer – A randomized study

Immediate versus delayed short-term integrated palliative care for advanced long-term neurological conditions: the OPTCARE Neuro RCT

Background Palliative care is recommended to help meet the needs of patients with progressive non-cancer conditions, such as long-term neurological conditions. However, few trials have tested palliative care in this population. Objectives To determine the effectiveness and cost-effectiveness of short-term integrated palliative care in improving symptoms, improving patient- and caregiver-reported outcomes and reducing hospital use for people severely affected by long-term neurological conditions. Design Pragmatic, randomised controlled, multicentre, fast-track trial, with an embedded qualitative component and surveys. Setting Seven UK centres (South London, Nottingham, Liverpool, Cardiff, Brighton, Ashford and Sheffield) with multiprofessional palliative care teams and neurology services. Participants People living with multiple sclerosis, idiopathic Parkinson’s disease, motor neurone disease, multiple system atrophy or progressive supranuclear palsy, with unresolved symptoms and/or complex psychosocial needs. The qualitative study involved patients, caregivers and health-care staff. Interventions Participants were randomised to receive short-term integrated palliative care, delivered by multiprofessional teams, immediately or after a 12-week wait (standard care group). Main outcome measures The primary outcome was a combined score of eight symptoms measured by the Integrated Palliative care Outcome Scale for Neurological conditions 8 symptom subscale (IPOS Neuro-S8) at 12 weeks. Secondary outcomes included patients’ other physical and psychological symptoms, quality of life (EuroQol-5 Dimensions, five-level version), care satisfaction, caregiver burden, service use and cost, and harms. Data were analysed using multiple imputation, generalised linear mixed models, incremental cost-effectiveness ratios (threshold was the National Institute for Health and Care Excellence £20,000 per quality-adjusted life-year) and cost-effectiveness planes. Qualitative data were analysed thematically. Results We recruited 350 patients and 229 caregivers. There were no significant between-group differences for primary or secondary outcomes. Patients receiving short-term integrated palliative care had a significant improvement, from baseline to 12 weeks, on the primary outcome IPOS Neuro-S8 (–0.78, 95% confidence interval –1.29 to –0.26) and the secondary outcome of 24 physical symptoms (–1.95, 99.55% confidence interval –3.60 to –0.30). This was not seen in the control group, in which conversely, care satisfaction significantly reduced from baseline to 12 weeks (–2.89, 99.55% confidence interval –5.19 to –0.59). Incremental cost-effectiveness ratios were smaller than the set threshold (EuroQol-5 Dimensions index score –£23,545; IPOS Neuro-S8 –£1519), indicating that the intervention provided cost savings plus better outcomes. Deaths, survival and hospitalisations were similar between the two groups. Qualitative data suggested that the impact of the intervention encompassed three themes: (1) adapting to losses and building resilience, (2) attending to function, deficits and maintaining stability, and (3) enabling caregivers to care. Conclusions Our results indicate that short-term integrated palliative care provides improvements in patient-reported physical symptoms at a lower cost and without harmful effects when compared with standard care. Limitations Outcome measures may not have been sensitive enough to capture the multidimensional changes from the intervention. Our surveys found that the control/standard and intervention services were heterogeneous. Future work Refining short-term integrated palliative care and similar approaches for long-term neurological conditions, focusing on better integration of existing services, criteria for referral and research to improve symptom management. Trial registration Current Controlled Trials ISRCTN18337380. Funding This project was funded by the National Institute for Health Research (NIHR) Health Services and Delivery Research programme and will be published in full in Health Services and Delivery Research; Vol. 8, No. 36. See the NIHR Journals Library website for further project information.

Effect of Short-term Integrated Palliative Care on Patient-Reported Outcomes Among Patients Severely Affected With Long-term Neurological Conditions

Palliative care has shown benefits in reducing symptom intensity and quality of life in patients with advanced cancer. However, high-quality evidence to support palliative care policy and service developments for patients with long-term neurological conditions (LTNCs) is lacking. To determine the effectiveness of a short-term integrated palliative care (SIPC) intervention for people with LTNCs. Multicenter, phase 3, randomized clinical trial conducted from April 1, 2015, to November 30, 2017, with a last follow-up date of May 31, 2018, in 7 UK hospitals with both neurology and palliative care services. A total of 535 patients with LTNC were assessed for eligibility and 350 were randomized. Inclusion criteria were patients 18 years or older with any advanced stage of multiple sclerosis, motor neuron disease, idiopathic Parkinson disease multiple system atrophy, or progressive supranuclear palsy. Data were analyzed from November 2018 to March 2019. Patients were randomized 1:1 using minimization method to receive SIPC (intervention, n = 176) or standard care (control, n = 174). Primary outcome was change in 8 key palliative care symptoms from baseline to 12-weeks, measured by the Integrated Palliative care Outcome Scale for neurological conditions. Secondary outcomes included change in the burden of other symptoms, health-related quality of life, caregiver burden, and costs. Data were collected and analyzed blindly by intention to treat. A total of 350 patients (mean [SD] age 67 [12] years; years since diagnosis, 12 [range, 0-56]; 51% men; 49% requiring considerable assistance) with an advanced stage of LTNC were recruited, along with informal caregivers (n = 229). There were no between-group differences in primary outcome (effect size, -0.16; 95% CI, -0.37 to 0.05), any other patient-reported outcomes, adverse events, or survival. Although there was more symptom reduction in the SIPC group in relation to mean change in primary outcome, the difference between the groups was not statistically significant (-0.78; 95% CI, -1.29 to -0.26 vs -0.28; 95% CI, -0.82 to 0.26; P = .14). There was a decrease in mean health and social care costs from baseline to 12 weeks -$1367 (95% CI, -$2450 to -$282) in the SIPC group and -653 (95% CI, -$1839 to -$532) in the control group, but this difference was not statistically significant (P = .12). SIPC was perceived by patients and caregivers as building resilience, attending to function and deficits, and enabling caregivers. In this study, SIPC was not statistically significantly different from standard care for the patient-reported outcomes. However, SIPC was associated with lower cost, and in qualitative analysis was well-received by patients and caregivers, and there were no safety concerns. Further research is warranted. isrctn.org Identifier: ISRCTN18337380.

Overview and symptom management in heart failure patients eligible for palliative care

Burden symptom in advanced heart failure highly affects quality of life of both patients and caregivers, leading to severe functional limitation and social isolation. Symptoms in the advanced phases of the disease are numerous and often underestimated and undertreated. This negatively affects not only quality of life, but also increases hospitalizations, reduces therapeutic adherence, impairs cardiac function and leads to reduced survival. When symptom control cannot be achieved only with specific cardiologic therapy, optimal care should shift to a combination of life-prolonging and symptom-relief approach, possibly to be initiated as soon as advanced phases are detected. Optimal treatment of severe and invalidating symptoms requires a multi-modal and multi-dimensional approach, as pharmacological therapy represents only a part of a global evaluation that should include spiritual and psycho-social factors, potentially influencing symptom perception. Assessment therefore should rely on multi-modal and multi-dimensional patient-centered score models, such as the Edmonton Symptom Assessment System (ESAS), the Kansas City Cardiomyopathy Questionnaire (KCCQ), or the Integrated Palliative care Outcome Scale (IPOS).Pain, dyspnea, depression, fatigue and less frequent but distressing symptoms, including gastrointestinal disorders (nausea, vomiting, fecal impaction, hiccups), cough, itching, skin xerosis and restless legs syndrome, will be analyzed, and evidence of best palliative practice will be discussed.

Face and Content Validity, Acceptability, and Feasibility of the Adapted Version of the Children's Palliative Outcome Scale: A Qualitative Pilot Study.

Objective: To assess the face and content validity, acceptability and feasibility of a French version of the Children's Palliative Outcome Scale (CPOS). Background: Instruments in French used to measure outcomes in pediatric palliative care are lacking. Methods: After forward-backward translation of the 12-item English CPOS to French, we conducted a qualitative pilot study. During semi structured interviews among children and parents, we used the CPOS, the Schedule for the Evaluation of Individual Quality of Life interview guide (SEIQoL) and the Quality of Life in Life-threatening Illness-Family Carer questionnaire (QOLLTI-F), in addition to three expert meetings with PLTs. Results: Fourteen children and adolescents (8-18 years) with life-limiting or life-threatening conditions cared for at home, in hospital or in respite care services, 19 parents, and 9 members of 4 pediatric liaison teams (PLTs) providing palliative care in a Belgian francophone region were included in the study. No families refused to participate. All children with verbal capacities chose to be interviewed in the presence of their parents and a PLT member. The children valued being given the opportunity to share their experiences. New QOL dimensions pertaining to social, emotional, and administrative health-care related issues were added to the original version of the 12-item CPOS, leading to a 22-item CPOS-2. Discussion: The CPOS-2 was perceived as relevant and easy to use by the principal stakeholders. Our study paves the way for a large-scale field study assessing its psychometric characteristics and its implementation in routine clinical care.

Association between palliative care and healthcare outcomes among adults with terminal non-cancer illness: population based matched cohort study

ObjectiveTo measure the associations between newly initiated palliative care in the last six months of life, healthcare use, and location of death in adults dying from non-cancer illness, and to...

Facilitating Client Ability to Communicate in Palliative End-of-Life Care

The client's ability to communicate is key to providing quality palliative end-of-life care. A speech–language pathologist (SLP) can facilitate the patient's ability to communicate concerns or preferences in order to (1) improve the health care team's ability to manage symptoms and engage in end-of-life discussions, and (2) support the patient and family's ability to maintain social connectivity. This article describes methods for implementing speech–language pathology communication consults in palliative or end-of life care. The information is illustrated with patient vignettes and supported by literature resources. Specific participation goals and outcomes illustrate the impact of the SLP treatment on the interprofessional team palliative care outcomes. Approaches to advocating for speech–language pathology communication consults in palliative end-of-life care are highlighted. Ongoing research and advocacy may result in valuable skilled speech–language pathology services for patients with communication barriers in palliative or end-of-life care.

Apoyo con Cariño: A Qualitative Analysis of a Palliative Care-Focused Lay Patient Navigation Intervention for Hispanics With Advanced Cancer.

A lay patient navigator model involving a culturally tailored intervention to improve palliative care outcomes for Hispanics with advanced cancer was tested across 3 urban and 5 rural cancer centers in Colorado. Five home visits were delivered over 3 months to 112 patients assigned to the randomized controlled trial's intervention arm. Grounded in core Hispanic values, visits addressed palliative care domains (advance care planning, pain/symptom management, and hospice utilization). To describe the content of patient navigator visits with patients/family caregivers, research team members analyzed 4 patient navigators' field notes comprising 499 visits to 112 patients. Based on previous work, codes were established a priori to identify ways patient navigators help patients/family caregivers. Key words and comments from field notes were classified into themes using ATLAS.ti and additional codes established. Nine common themes and exemplars describing the lay patient navigator role are described: activation/empowerment, advocacy, awareness, access, building rapport, providing support, exploring barriers, symptom screening, and the patient experience. Patient navigators used advocacy, activation, education, and motivational interviewing to address patient/family concerns and reduce barriers to quality palliative care in urban and rural settings. Adapting and implementing this model across cultures has potential to improve palliative care access to underserved populations.

Content validation of the EORTC QLQ-C15-PAL with advanced cancer patients and health care professionals from palliative care services in Chile

BackgroundThe assessment of patients’ quality of life (QOL) is essential when evaluating the outcome of palliative care; however, no instruments have been validated for measuring symptoms and QOL in patients receiving palliative care in Chile. We aimed to investigate the content validity of the EORTC Quality of Life Questionnaire Core 15 Palliative Care (QLQ-C15-PAL), replicating the methods used previously to shorten the EORTC Quality of Life Questionnaire Core 30 (QLQ-C30) for use among patients in palliative care.MethodsThis cross-sectional study was conducted from October to November 2017 in four palliative care services. Patients with advanced cancer and health care professionals (HCPs) were invited to individual interviews to determine the relevance, appropriateness and relative importance of the 30 items of the QLQ-C30 for evaluating the outcome of palliative care, and whether relevant additional issues should be included.ResultsA total of 48 patients and 35 HCPs participated. The most important dimensions selected were pain, physical functioning, sleeping difficulties, emotional functioning, nausea/vomiting, fatigue, social functioning, lack of appetite, role functioning and constipation. Qualitative data identified important additional issues not covered by the questionnaire such as satisfaction with care, emotions and psychological support, as well as linguistic issues in the dyspnea and constipation items.ConclusionsThe EORTC QLQ-C15-PAL showed good content validity in the assessment of symptoms and QOL of advanced cancer patients; therefore, we recommend the use of this questionnaire in palliative care in Chile. Dyspnea and constipation items were revised by the EORTC group. More research is needed to add a social dimension for a comprehensive assessment of patients’ QOL.

Assessing palliative care education in undergraduate medical students: translation and validation of the Self-Efficacy in Palliative Care and Thanatophobia Scales for Brazilian Portuguese

BackgroundAs the global population ages, palliative care is ever more essential to provide care for patients with incurable chronic conditions. However, in many countries, doctors are not prepared to care...

P0833SYMPTOM BURDEN IN CHRONIC KIDNEY DISEASE : A CASE FOR STARTING KIDNEY SUPPORTIVE CARE CLINIC

Abstract Background and Aims Chronic Kidney Disease(CKD) is associated with a huge symptom burden which increases with progression and leads to depreciation in Quality of life both directly and indirectly through effects on functional status, health perception, and feelings of subjective well-being. Dialysis therapy does not completely improve symptoms. We studied supportive care needs of patients with CKD through assessment of symptoms using translated version of Integrated Palliative Care Outcome Scale (IPOS- Renal) in a single tertiary health setting. Method Patients with chronic Kidney disease having creatinine clearance less than 60 ml/min/m2 were surveyed using IPOS Renal modified translated to vernacular language by forward- backward method. Translated version was approved by independent translator. Symptoms were classified into domains and analyzed using descriptive statistics. Scores were compared for those on maintenance hemodialysis with predialysis CKD patients. Results Of 184 patients, 128(69.6%) were receiving twice weekly hemodialysis, mean age was 52 years (range 20-82 year), 140(76%) were male. Average duration of dialysis was 4 years, 87 (46.9%) reported pain of which 39/87(45%) had moderate to severe pain. Other symptoms over past one week were dyspnea in 59(33.6%), Fatigue in 117(69.4%), Nausea in 53(33.6%), Vomiting in 36(20.9%), Anorexia in 90(42.4%), Constipation in 50(35.3%), Dry mouth/soreness in 62(36.4%), increased drowsiness in 63(46.6%), poor mobility in 87(55.8%), Itching in 69(39.3%), Disturbed sleep in 83(48.6%), Restless leg in75(43.6%), Skin related problems in 47(28.6%). Five patients reported presence of other severe symptoms. In Psychosocial domain 138(79.8%) patients and 126(72.8 %) family members expressed anxiety related to their disease or treatment of which one third had persistent anxiety, 140(81.6%) felt depressed and among them 58(42%) felt it most of the time or always and 145(88.6%) felt that they were not at peace, 59(35%) felt they did not have enough information about their disease and treatment and 79(47%) reported that they had unaddressed financial or personal problems, 124(77.2 %) felt they had to spend significant amount of time in healthcare facility. Patients on dialysis had significantly higher symptoms burden and Psychosocial needs. Conclusion CKD patients face high physical and psychosocial burden which is unaddressed in present clinical care and increases with stage. Tools such as iPOS renal are required to assess need of supportive care in CKD. Kidney supportive care clinic may be required to address this unmet need.

P0958THE EX-FRAIL CKD TRIAL: A PILOT RANDOMISED CONTROLLED TRIAL OF A HOME-BASED EXERCISE PROGRAMME FOR PRE-FRAIL AND FRAIL, OLDER ADULTS WITH CHRONIC KIDNEY DISEASE

Abstract Background and Aims Frailty is highly prevalent in adults with chronic kidney disease (CKD) and is associated with adverse health outcomes. However, exercise training may improve physical function leading to associated improvements in outcomes. The EX-FRAIL CKD trial (ISRCTN87708989) aimed to inform the design of a randomised controlled trial (RCT) that investigates the efficacy of a progressive home-based exercise programme in pre-frail and frail older adults with CKD. Methods Patients aged ≥65 years with CKD G3b-5 and a Clinical Frailty Scale score ≥4 were eligible for participation. Participants categorised as pre-frail or frail, following Frailty Phenotype (FP) assessment, were randomised to receive a tailored 12-week home-based exercise programme or usual care (UC). Primary outcome measures included recruitment, intervention adherence, outcome measure completion and participant attrition rate. Secondary outcome measures included frailty status (FP), physical function (walking speed, handgrip strength and Short Physical Performance Battery [SPPB]), fall concern (Falls Efficacy Scale-International tool [FESI]), symptom-burden (Palliative Care Outcome Scale-Symptoms RENAL [POS-S RENAL]) and health-related quality of life (Short Form-12v2 [SF-12]). Outcome measures are reported descriptively with 95% confidence intervals (CI) as recommended for pilot trials. Progression criteria to RCT stage were defined as: (1) eligibility: STOP <5%, GO >10%; (2) recruitment: STOP <10%, GO >30%; (3) exercise adherence: STOP: <30%, GO >70%; (4) outcome measure completion: STOP <70%, GO >80%; and (5) loss to follow-up: STOP >50%, GO <25%. Results Six hundred and sixty-five participants had an eligibility assessment with 201 (30% [95% CI 27-34]) patients eligible for enrolment. Thirty-five (17% [95% CI 12-23]) participants were recruited. Six participants were categorised as robust and therefore withdrawn prior to randomisation. Fifteen participants were randomised to exercise (mean age 77.0±8.3 years; mean eGFR 18.9±7.0 ml/min/1.73m2) and 14 to UC (mean age 78.8±7.0 years; mean eGFR 20.4±7.2 ml/min/1.73m2). Eleven (73% [95% CI 45-92]) exercise group participants completed an average of ≥2 exercise sessions/week. Eight (28% [95% CI 13-47]) participants were lost to follow-up. Retained participants (n=21, 100% [95% CI 84-100]) completed all outcome measures. There were 32 adverse events in the exercise group and 22 in the UC group. Within the exercise group, there were 2 hospitalisations (considered unrelated to exercise) and 12 adverse reactions: musculoskeletal pain (9), fall (1), nocturnal leg cramps (1) and postural dizziness (1). The odds ratio for improvement in frailty status with exercise was 5.50 (95% CI 0.46-65.16) and odds ratio for deterioration in frailty status was 0.63 (95% CI 0.05-8.20). The adjusted mean group difference in walking speed, grip strength and SPPB between exercise and UC groups were: 0.01 metres/second (95% CI -0.07-0.10), 3.6 kg (95% CI -0.6-7.9) and 0.5 (95% CI -0.9-1.8), respectively. The adjusted mean group difference in POS-S RENAL, FESI, SF-12 Physical Component Summary and SF-12 Mental Component Summary scores were: -1.4 (95% CI -6.6-3.7), 3.4 (95% CI -3.5-10.3), -3.9 (95% CI -9.3-1.5) and 0.2 (95% CI -6.2-6.6), respectively. Conclusion Eligibility, adherence and outcome measure progression criteria thresholds were exceeded; however, recruitment and loss to follow-up progression criteria thresholds were not achieved. Analysis of a nested qualitative study will explore perceived barriers to participation and retention. The EX-FRAIL CKD trial demonstrates that it is possible to progress to a definitive RCT with adaptations that address the barriers described. It has also provided preliminary evidence that frailty status and physical function may be improved with a home-based exercise programme in patients living with frailty and CKD.

Palliative care needs and utilization of specialist services for people imminently dying with dementia: A national population-based study

BackgroundThere is a growing emphasis on the importance of availability of specialist palliative care for people living with dementia. However, for people imminently dying with dementia, we still have little knowledge about their palliative care needs and utilization of different specialist services. ObjectivesTo (i) assess palliative care needs and other clinical and social characteristics of people imminently dying with dementia on their last admission in the context of community and inpatient palliative care services before death; (ii) compare care needs between patients requiring community-based and inpatient services; (iii) determine how and whether such care needs affect utilization of different palliative care services. DesignObservational study using data from the Australian Palliative Care Outcomes Collaboration. SettingsSpecialist palliative care services across Australia registered in the Palliative Care Outcomes Collaboration. ParticipantsA total of 3361 people who required specialist palliative care principally for dementia (including Alzheimer's disease and other dementias), and whose death occurred between 1 January 2013 and 31 December 2018. MethodsFive validated clinical instruments were used to collect point-of-care outcomes on each individual's function (Resource Utilisation Groups - Activities of Daily Living & Australia-modified Karnofsky Performance Status), symptom distress (Symptoms Assessment Scale & Palliative Care Problem Severity Score) and other clinical characteristics (Palliative Care Phases). We fitted multivariate logistic regression models to examine the association between these clinical outcomes and utilization of different specialist palliative care services. ResultsThe majority of people imminently dying with dementia had absent or mild levels of symptom distress but experienced high levels of functional decline and needed substantial assistance with basic tasks of daily living in their last days of life. Large disparities in symptoms distress and functional decline between inpatient and community groups were not observed although differences in assessment scores were often statistically significant. Poor functional outcomes (odds ratio = 1.77, 95% confidence interval: 1.24–2.52) and “non-stable” palliative care phases (odds ratio =24.51, 95% confidence interval: 12.03–49.96) were positively associated with use of inpatient versus community palliative care, whereas there was no clear association between the majority of symptoms and use of different care services. ConclusionsThe majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in the community. Development of a dementia-specific palliative care pathway is needed to promote needs-based palliative care delivery models. Tweetable abstractthe majority of people imminently dying with dementia could potentially benefit from greater access to supportive services in community.

P1109HDX: IS IT A BETTER WAY TO DIALYSE?

Abstract Background and Aims Inadequate dialysis has been linked to reduced quality of life, increased symptom burden and increased risk of cardiovascular illness in patients with chronic kidney disease. This is especially significant in long-term haemodialysis patients who have little to no residual urine output and are thus almost entirely dependent on good quality dialysis to remove toxins and fluid. In most conventional haemodialysis modes middle molecule clearance is inadequate. This in turn plays an important part in causing multiple complications. HDx is a new type of haemodialysis being introduced using Theranova® dialyzer. This claims to have medium cut-off membranes, functioning similar to a kidney, hence providing better clearance of middle molecules, whilst selectively preventing loss of proteins from the body. In order to test the safety and efficacy of HDx using Theranova® we tried it in a cohort of our patients in the form of an audit. Our primary objective was to find out the effect of HDx on quality of life. Secondary objective was to determine whether HDx improves blood biochemistry, with a reduction in medication & transfusion needs. Method Thirty seven Haemodialysis patients were switched from hemodiafiltration to HDx, out of these 3 patients were transplanted, 2 patients died, 1 patient switched back and 7 patients were transferred to satellite units. Audit was continued with the remaining 24 patients. All patients completed an Integrated Palliative Care Outcome Score (IPOS) prior to commencing on HDx and then at six months. Blood parameters including phosphorous, calcium, haemoglobin, Ferritin and CRP were measured monthly and mean values of 6 months before and after HDx initiation were compared. Comparison of erythropoietin, intravenous iron and packed red blood cell transfusion requirements pre and post HDx commencement were also undertaken. Results No obvious adverse effects were noted with use of HDx dialysis. All patients had an improvement in overall IPOS scores after being on HDx for 6 months. Shorter post dialysis symptom recovery times were also noted. 13 patients had a decrease in their erythropoietin requirements, in 2 patients requirement remained the same, 9 patients had increase in their requirement however 3 of these patients had been requiring packed red blood cell transfusion prior to HDx commencement, no longer required transfusion. We found an overall improvement in patients iron infusion need. 11 patients had a dose reduction, with 4 of these patients no longer requiring iron. 9 patients continued to have the same requirements. 4 patients had an increase in iron dose, but 3 of these patients previously being transfusion dependant no longer required regular transfusions. We also noted that with use of HDx clotting risk was reduced and patients who were switched from Evodial (heparin coated dialyzer membranes) to HDx did not have increased circuit clotting. With regards to inflammation we noted no significant changes in CRP, ferritin levels and other blood parameters. Conclusion Looking at our cohort of patients we concluded that HDx is safe to use with no obvious adverse effects. It seems that use of HDx is particularly helpful in improving quality of life in dialysis patients as indicated by improvement in IPOS scores. IPOS is a validated questionnaire to measure symptoms and concerns in patients with advanced illnesses. As life quality is a major concern in dialysis patients, this outcome is of particular significance. HDx was also helpful in reducing the overall burden of transfusions, iron and erythropoietin requirements. This is beneficial in overall patient health and cost burden. Based on the above we found out that HDX was safe and effective in our patient cohort, however large-scale studies will be required for more conclusive evidence.

The EX-FRAIL CKD trial: a study protocol for a pilot randomised controlled trial of a home-based EXercise programme for pre-frail and FRAIL, older adults with Chronic Kidney Disease

IntroductionFrailty is highly prevalent in adults with chronic kidney disease (CKD) and is associated with adverse health outcomes including falls, poorer health-related quality of life (HRQOL), hospitalisation and mortality. Low...

P0205SYMPTOM BURDEN IN AUSTRALIAN PATIENTS WITH ADVANCED CHRONIC KIDNEY DISEASE AND END-STAGE KIDNEY DISEASE RECEIVING RENAL SUPPORTIVE CARE: A SINGLE CENTRE COHORT STUDY

Abstract Background and Aims Renal supportive care (RSC) is a novel multidisciplinary patient-centred model of care that focuses on symptom management and quality of life improvement in patients with advanced chronic kidney disease (CKD) and end-stage kidney disease (ESKD), including conservative care. Despite an increased interest in embedding RSC into routine nephrology practice, there is limited literature on the effects of symptom improvement in patients attending RSC services. We aimed to examine symptom improvement and symptom progression in patients receiving renal supportive care. Method Using Integrated Palliative care Outcome Scale Renal (IPOS-renal) scores collected during routine RSC clinics, we analysed the changes in individual IPOS-renal items and summative scores for symptoms associated with chronic kidney disease, stratified by time from the initial clinic visit (0-6 months, 6-12 months, and >12 months), in all patients attending our RSC service in a tertiary hospital between November 2015 and July 2019. Results Of 245 patients referred to our RSC service, 61 patients completed two or more IPOS-renal surveys. At initial visit, majority of the patients were reviewed at hospital outpatient clinic (n=42, 71%), followed by dialysis (n=8, 13%), home visit (n=6, 10%), and inpatient ward (n=4, 7%). The median (IQR) eGFR was 13 (7-16) ml/min/1.73m2 and median Karnofsky score was 70 (60-80). Weakness (n=59, 97%) and poor mobility (n=52, 85%) were the most common initial complaints. For all reported symptoms, dyspnea improved the most for all three time periods (summative IPOS score changes of 28, 17, and 8 points for 0-6, 6-12, >12 months, respectively). Poor mobility was the only symptom that continued to deteriorate between 0-6 months despite attending renal supportive care (without a physiotherapist). For asymptomatic patients, more than half of the symptoms remained quiescent after attending RSC service for more than 12 months. Among newly developed symptoms, nausea, dyspnea, and drowsiness were most common between 0-6 months. In contrast, pruritus, dry mouth, and constipation were the most common complaints after 12 months. Conclusion RSC interventions provided symptom improvement in patients with advanced CKD and ESKD, but poor mobility remained a concern in this population. Incorporating physiotherapy to RSC may further improve symptom management.

Systematic symptom and problem assessment at admission to the palliative care ward \u2013 perspectives and prognostic impacts

BackgroundSymptom assessment is essential in palliative care, but holds challenges concerning implementation and relevance. This study aims to evaluate patients’ main symptoms and problems at admission to a specialist inpatient palliative care (SIPC) ward using physician proxy- and patient self-assessment, and aims to identify their prognostic impact as well as the agreement between both assessments.MethodsWithin 12 h after admission, palliative care specialists completed the Symptom and Problem Checklist of the German Hospice and Palliative Care Evaluation (HOPE-SP-CL). Patients either used the new version of the minimal documentation system for patients in palliative care (MIDOS) or the Integrated Palliative Care Outcome Scale (IPOS) plus the Distress Thermometer (DT).ResultsBetween 01.01.2016–30.09.2018, 1206 patients were included (HOPE-SP-CL 98%; MIDOS 21%, IPOS 34%, DT 27%) whereof 59% died on the ward. Proxy-assessment showed a mean HOPE-SP-CL Total Score of 24.6 ± 5.9 of 45. Most frequent symptoms/problems of at least moderate intensity were weakness (95%), needs of assistance with activities of daily living (88%), overburdening of family caregivers (83%), and tiredness (75%). Factor analysis identified four symptom clusters (SCs): (1) Deteriorated Physical Condition/Decompensation of Home Care, (2) Emotional Problems, (3) Gastrointestinal Symptoms and (4) Other Symptoms. Self-assessment showed a mean MIDOS Total Score of 11.3 ± 5.3 of 30, a mean IPOS Total Score of 32.0 ± 9.0 of 68, and a mean distress of 6.6 ± 2.5 of 10. Agreement of self- and proxy-assessment was moderate for pain (ƙ = 0.438) and dyspnea (ƙ = 0.503), fair for other physical (ƙ = 0.297 to 0.394) and poor for psychological symptoms (ƙ = 0.101 to 0.202). Multivariate regression analyses for single symptoms and SCs revealed that predictors for dying on the SIPC ward included impaired ECOG performance status, moderate/severe dyspnea, appetite loss, tiredness, disorientation/confusion, and the SC Deteriorated Physical Condition/Decompensation of Home Care.ConclusionAdmissions to a SIPC ward are mainly caused by problems impairing mobility and autonomy. Results demonstrate that implementation of self- and reliability of proxy- and self-assessment is challenging, especially concerning non-physical symptoms/problems. We identified, specific symptoms and problems that might provide information needed for treatment discussions regarding the medical prognosis.