Validation of the responding to urgency of need in palliative care (RUN-PC) triage tool.

BACKGROUND: The Responding to Urgency of Need in Palliative Care (RUN-PC) Triage Tool is a novel, evidence-based tool by which specialist palliative care services can manage waiting lists and workflow by prioritising access to care for those patients with the most pressing needs in an equitable, efficient and transparent manner. AIM: This study aimed to establish the intra- and inter-rater reliability, and convergent validity of the RUN-PC Triage Tool and generate recommended response times. DESIGN: An online survey of palliative care intake officers applying the RUN-PC Triage Tool to a series of 49 real clinical vignettes was assessed against a reference standard: a postal survey of expert palliative care clinicians ranking the same vignettes in order of urgency. SETTING/PARTICIPANTS: Intake officers (n = 28) with a minimum of 2 years palliative care experience and expert clinicians (n = 32) with a minimum of 10 years palliative care experience were recruited from inpatient, hospital consultation and community palliative care services across metropolitan and regional Victoria, Australia. RESULTS: The RUN-PC Triage Tool has good intra- and inter-rater reliability in inpatient, hospital consultation and community palliative care settings (Intraclass Correlation Coefficients ranged from 0.61 to 0.74), and moderate to good correlation to expert opinion used as a reference standard (Kendall's Tau rank correlation coefficients ranged from 0.68 to 0.83). CONCLUSION: The RUN-PC Triage Tool appears to be a reliable and valid tool for the prioritisation of patients referred to specialist inpatient, hospital consultation and community palliative care services.

Describing the psychosocial profile and unmet support needs of parents caring for a child with a life-limiting condition: A cross-sectional study of caregiver-reported outcomes.

BACKGROUND: There is a lack of studies examining the prevalence and severity of psychosocial distress in parents caring for a child with life-limiting condition. More research is also needed to better understand the experience, support needs and quality-of-life of this population. AIM: To describe the experience and support needs of caring for children with life-limiting conditions and examine the level of distress and quality-of-life experienced by parents. DESIGN: Cross-sectional, prospective, quantitative study guided by an advisory group. Participants completed a survey that included demographics and self-report outcome measures of unmet support needs, appraisal of caregiving, psychological distress and quality-of-life. Bivariate correlation analyses were performed to examine for associations between measures. SETTING/PARTICIPANTS: Parents currently caring for one or more children (⩽18 years) with a life-limiting condition and registered with a paediatric palliative care service (Australia). RESULTS: In total, 143 parents (88% female) completed the questionnaire (36% RR). Compared with population norms, participants reported low quality-of-life, high carer burden and high psychological distress. Almost half (47%) of the sample met the criteria for one or more diagnoses of clinically elevated stress, anxiety or depression. There were significant associations between the psychosocial outcome variables; carer strain and depression had the strongest correlations with quality-of-life (r = -.63, p < .001, for both). Participants also reported multiple unmet needs related to emotional and practical support. CONCLUSIONS: This study contributes to the growing body of evidence on paediatric palliative care, specifically that parents caring for a child with a life-limiting condition report high levels of distress and burden, low quality-of-life and need more emotional and practical support targeted at their unmet needs. Paediatric palliative care services should routinely assess parent mental health and provide appropriate support.

Triaging the Terminally Ill-Development of the Responding to Urgency of Need in Palliative Care (RUN-PC) Triage Tool.

CONTEXT: Evidence-based resource allocation is receiving increasing attention as we strive for equity, transparency, and cost-effectiveness across health care. In the context of finite resources, which of our patients with terminal illness should be prioritized for urgent palliative care? OBJECTIVES: To develop the scoring system for the novel Responding to Urgency of Need in Palliative Care triage tool. METHODS: Online international discrete choice experiment involving palliative care clinicians to establish the relative importance of seven key attributes of palliative care triage identified during an earlier qualitative study. RESULTS: Participants (n = 772) were mainly female (79.9%) with a decade of clinical experience. All attributes contributed significantly (all P-values < 0.001) and independently to clinician assessment of urgency. This study found physical suffering (coefficient 3.45; 95% confidence interval: 3.24 to 3.66) was the most important determinant of urgency, followed by imminent dying (coefficient 1.56; 1.43 to 1.69), psychological suffering (coefficient 1.49; 1.37 to 1.60), caregiver distress (coefficient 1.47; 1.35 to 1.59), discrepancy between care needs and care arrangements (coefficient 1.14; 1.02 to 1.26), mismatch between current and desired site of care (coefficient 0.94; 0.85 to 1.03), and unmet communication needs (coefficient 0.84; 0.76 to 0.92). CONCLUSION: Palliative care triage, which is complex and contextual, has been made more transparent through this discrete choice experiment. The Responding to Urgency of Need in Palliative Care triage tool provides an important step toward evidence-based assessment of priority for palliative care. Further research is underway to determine the validity of the tool in clinical practice and its impact on patient and caregiver outcomes.

Development and validation of the Scleroderma Clinical Trials Consortium Damage Index (SCTC-DI): a novel instrument to quantify organ damage in systemic sclerosis.

OBJECTIVE: We sought to develop the first Damage Index (DI) in systemic sclerosis (SSc). METHODS: The conceptual definition of 'damage' in SSc was determined through consensus by a working group of the Scleroderma Clinical Trials Consortium (SCTC). Systematic literature review and consultation with patient partners and non-rheumatologist experts produced a list of potential items for inclusion in the DI. These steps were used to reduce the items: (1) Expert members of the SCTC (n=331) were invited to rate the appropriateness of each item for inclusion, using a web-based survey. Items with >60% consensus were retained; (2) Using a prospectively acquired Australian cohort data set of 1568 patients, the univariable relationships between the remaining items and the endpoints of mortality and morbidity (Physical Component Summary score of the Short Form 36) were analysed, and items with p<0.10 were retained; (3) using multivariable regression analysis, coefficients were used to determine a weighted score for each item. The DI was externally validated in a Canadian cohort. RESULTS: Ninety-three (28.1%) complete survey responses were analysed; 58 of 83 items were retained. The univariable relationships with death and/or morbidity endpoints were statistically significant for 22 items, with one additional item forced into the multivariable model by experts due to clinical importance, to create a 23-item weighted SCTC DI (SCTC-DI). The SCTC-DI was predictive of morbidity and mortality in the external cohort. CONCLUSIONS: Through the combined use of consensus and data-driven methods, a 23-item SCTC-DI was developed and retrospectively validated.

Novel application of discrete choice experiment methodology to understand how clinicians around the world triage palliative care needs: A research protocol.

OBJECTIVE: As referrals to specialist palliative care (PC) grow in volume and diversity, an evidence-based triage method is needed to enable services to manage waiting lists in a transparent, efficient, and equitable manner. Discrete choice experiments (DCEs) have not to date been used among PC clinicians, but may serve as a rigorous and efficient method to explore and inform the complex decision-making involved in PC triage. This article presents the protocol for a novel application of an international DCE as part of a mixed-method research program, ultimately aiming to develop a clinical decision-making tool for PC triage. METHOD: Five stages of protocol development were undertaken: (1) identification of attributes of interest; (2) creation and (3) execution of a pilot DCE; and (4) refinement and (5) planned execution of the final DCE.ResultSix attributes of interest to PC triage were identified and included in a DCE that was piloted with 10 palliative care practitioners. The pilot was found to be feasible, with an acceptable cognitive burden, but refinements were made, including the creation of an additional attribute to allow independent analysis of concepts involved. Strategies for recruitment, data collection, analysis, and modeling were confirmed for the final planned DCE.Significance of resultsThis DCE protocol serves as an example of how the sophisticated DCE methodology can be applied to health services research in PC. Discussion of key elements that improved the utility, integrity, and feasibility of the DCE provide valuable insights.

Patient-reported outcome measures and their utility in the management of patients with advanced chronic kidney disease.

Symptom and quality of life (QOL) measures in patients with advanced chronic kidney disease are recognized indicators of patient-centred care and represent important research, quality and clinical measures. This study examined relationships between symptom burden, QOL and functional status and associations of symptoms and mortality risk. A multisite longitudinal cohort analysis was undertaken in chronic kidney disease stage 4/5 (no dialysis) and dialysis patients. Patients completed symptom and QOL measures (Palliative Care Outcome Symptom Score renal), World Health Organisation QOL Brief Version) and Karnofsky Performance scale. Clinical and demographic data were recorded.

The trajectory of patients who die from metastatic prostate cancer: a population-based study.

OBJECTIVES: To describe health service use, symptom and survival characteristics in metastatic prostate cancer (mPCa) in order to outline usual care practices and identify future opportunities to improve the quality of care in this patient group. PATIENTS AND METHODS: This population cohort study, conducted in Victoria, Australia, used 10 years (2000-2010) of linked hospital discharge, emergency visit, and death registration data, to track patients from their first inpatient admission with mPCa until death. Descriptive statistics on inpatient health service use, symptoms, procedures, survival, and place of death are presented. RESULTS: In all, 4436 patients survived a median (interquartile range [IQR]) of 4 (1, 12) months from their first multiday admission with mPCa. They had a median (IQR) of 3 (1, 9) admissions, 1 (0, 2) emergency department presentation, and 35 (18, 63) days admitted to hospital. Lower urinary tract symptoms were common (50%), and 21% underwent lower urinary tract procedures, whilst 48% had blood product transfusions. In the last month of life, 3685 (83%) had at least one indicator of aggressive end-of-life care, including 48% with more than one acute hospital admission, and 55% staying ≥14 days. Hospital-based palliative care was accessed by 2657 (60%), occurring a median (IQR) of 30 (11, 74) days before death. In all, 23% died in the community, whilst 77% died in hospital, of whom 55% died in an acute hospital bed. CONCLUSION: Half of all decedents first admitted for a multiday stay with mPCa survived <4 months thereafter. They had a marked symptom burden, underwent multiple procedures and had multiple admissions. In all, 40% of patients did not receive any hospital-based palliative care. Several opportunities exist to improve the timely transition to palliative care services with mPCa. These data form a benchmark against which future improvements to palliative care integration may be measured.

Responding to urgency of need: Initial qualitative stage in the development of a triage tool for use in palliative care services.

BACKGROUND: Palliative care services face the challenge of a workload increasing in volume and diversity. An evidence-based triage method to assess urgency of palliative care needs is required to ensure equitable, efficient and transparent allocation of specialist resources when managing waiting lists. AIM: As the initial stage of a mixed-method sequential design, this study aimed to explore palliative care providers' practices and attitudes towards triaging palliative care needs and their views regarding the implementation of a standardised approach. DESIGN: A qualitative study was conducted involving focus groups and interviews. Transcripts were subjected to deductive thematic analysis. SETTING/PARTICIPANTS: A total of 20 palliative care providers were purposively sampled to ensure representation across disciplines (primary, specialist; medicine, nursing and allied health), service types (inpatient, hospital liaison and community) and locations (metropolitan and rural). RESULTS: A series of markers of urgency were identified, including physical and psychological suffering, caregiver distress, discrepancy between care needs and care arrangements, mismatch between current site of care and desired site of death when in terminal phase and complex communication needs. Performance status and phase of disease were reported to be less informative when considered in isolation. Interpersonal and system-based barriers to the implementation of a palliative care triage tool were highlighted. CONCLUSION: The process of triage in the palliative care setting is complex but can be conceptualised using a limited number of domains. Further research is required to establish the relative value clinicians attribute to these domains and thus inform the development of an acceptable and useful evidence-based palliative care triage tool.

Transition Points for the Routine Integration of Palliative Care in Patients With Advanced Cancer.

CONTEXT: Increasing emphases are being placed on early integration of palliative care for patients with advanced cancers, yet barriers to implementation in clinical practice remain. Criteria to standardize referral have been endorsed, but their application is yet to be tested at the population level. OBJECTIVES: This study sought to establish the need for standardized referral by examining current end-of-life care outcomes of decedents with cancer and define transition points within a cancer illness course, which are associated with poor prognosis, whereby palliative care should be routinely introduced to augment clinician-based decision making. METHODS: Population cohort study of admitted patients with advanced cancer diagnosed with non-small cell lung cancer (NSCLC), small cell lung cancer (SCLC), prostate or breast cancer between 2000 and 2010 in Victoria, Australia, identified from routinely collected, linked, hospital discharge, emergency department, and death registration data. Descriptive statistics described quality indicators for end-of-life care outcomes for decedents. Kaplan-Meier analyses were used to test the predefined transition point that mostly accurately predicted survival of six months or lesser. RESULTS: About 46,700 cases (56% females) were admitted with metastatic NSCLC (n = 14,759; 31.6%), SCLC (n = 2932; 6%), prostate (n = 9445; 20.2%), and breast cancer (n = 19,564; 41.9%). Of the 29,680 decedents, most (80%) died in hospital, had suboptimal end-of-life care outcomes (83%), and 59% received a palliative approach to care, a median of 27 days before death. Transition points in the cancer illness course of all cases were identified as first admission with any metastatic disease (NSCLC: 3.8 months [interquartile range {IQR} 1.1, 16.0]; n = 14,666; and SCLC: 4.2 months [IQR 1.0, 10.6]; n = 2914); first multiday admission with any metastatic disease (prostate: 6.0 months [IQR 1.3, 26.4]; n = 7174); and first multiday admission with at least one visceral metastatic site (breast: 6.0 months [IQR 1.2, 29.8]; n = 7120). CONCLUSION: Despite calls for integrated palliative care, this occurs late or not at all for many patients with cancer. Our findings demonstrate the application of targeted cancer-specific transition points to trigger integration of palliative care as a standard part of quality oncological care and augment clinician-based referral in routine clinical practice.

Comparative Effectiveness of Routine Invasive Coronary Angiography for Managing Unstable Angina.

BACKGROUND: Non-ST-segment elevation acute coronary syndromes include unstable angina and non-ST-segment elevation myocardial infarction. Most randomized controlled trials of routine versus selective invasive coronary angiography have high rates of crossover from control to intervention groups and do not include subgroup analysis for unstable angina. Consequently, no clear, specific recommendations exist regarding the use of angiography in unstable angina. OBJECTIVE: To assess the effect of angiography on mortality in unstable angina, incorporating the results of additional cardiac procedures and events. DESIGN: Longitudinal study using hospital discharge data, discrete-time survival analysis with propensity score adjustment, and sensitivity analysis. SETTING: Victoria, Australia, 2001 to 2011. PARTICIPANTS: All residents, all ages. INTERVENTION: Routine invasive coronary angiography. MEASUREMENTS: 12-month all-cause mortality. RESULTS: Emergently admitted patients with unstable angina (n = 33 901) who did or did not receive angiography during their first hospitalization were balanced on 44 covariates of propensity score. Routine angiography was associated with a 52% decrease in 12-month mortality (hazard ratio, 0.48 [95% CI, 0.38 to 0.61]); revascularization offered no additional statistical mortality benefit compared with diagnostic angiography alone. The predicted cumulative probability of death at 12 months was 0.024 (CI, 0.021 to 0.027) for patients receiving angiography within 2 months of their index unstable angina versus 0.097 (CI, 0.090 to 0.105) for those not receiving it. Sensitivity analysis demonstrated that to negate the observed effect size, an unmeasured confounder must independently decrease mortality by 90% and have a prevalence gap of 15% or greater between the angiographic groups. LIMITATION: Nonrandom allocation of angiography. CONCLUSION: Patients with unstable angina benefit from an invasive management pathway initiated by invasive coronary angiography during their hospitalization and up to 2 months after discharge. PRIMARY FUNDING SOURCES: National Health and Medical Research Council, Australia and BUPA Health Foundation.

Toll-like Receptor Expression and Signaling in Peripheral Blood Mononuclear Cells Correlate With Clinical Outcomes in Acute Hepatitis C Virus Infection.

BACKGROUND: Mechanisms by which spontaneous clearance of acute hepatitis C occurs are unclear. A critical role for the innate immune system and IFNL4 polymorphisms has been proposed. This study investigates whether Toll-like receptor (TLR) expression and signaling during acute hepatitis C correlates with clinical outcomes. METHODS: Participants identified from the Australian Trial in Acute Hepatitis C and the Networks study were followed longitudinally from the time of diagnosis of acute hepatitis C. Peripheral blood mononuclear cells (PBMCs) and plasma were collected at and 2 time points after diagnosis. At each time point, TLR2, TLR4, and CD86 expression on peripheral blood monocytes, natural killer (NK) cells, and NK T cells was measured, as well as the response of PBMCs to stimulation with TLR ligands. Cytokine and chemokine levels were measured in stimulated PBMCs and plasma. RESULTS: We identified 20 participants with acute hepatitis C (10 with hepatitis C virus [HCV] monoinfection and 10 with HCV and human immunodeficiency virus coinfection). Eleven participants (55%) spontaneously cleared HCV. Acute hepatitis C and spontaneous clearance was associated with lower TLR4 expression on monocytes (P = .009) and NK cells (P = .029). Acute hepatitis C and spontaneous clearance was also associated with a reduced interferon γ response to TLR4 (P = .038) and TLR7/8 stimulation (P = .035), a reduced interleukin 6 response to TLR7/8 stimulation (P = .037), and reduced IFN-γ-inducible protein 10 (IP-10) response to TLR2 stimulation (P = .042). Lower plasma IP-10 levels were associated with spontaneous clearance (P = .001). CONCLUSIONS: These findings implicate TLR4 signaling as playing a critical role in the outcome of acute hepatitis C.