Latest Australian research

Wijayarathne PM, Menahem S.

Introduction: Patients with adult congenital heart disease (ACHD) now survive well into adulthood though their overall long-term survival remains below the general population. Advance care planning (ACP) has been endorsed by clinical guidelines, yet it is infrequently discussed and/or implemented.

Methods: As part of an international multicentre APPROACH-IS II study, 184 consecutive ACHD patients completed a questionnaire regarding their perceptions on the future and ACP.

Results: There were 88 males and 96 females in the study. The mean age was 29.4±8.94 years. The mean score for future health concern was 5.83±2.55, (0=no concerns, 10=extreme concern). Concern regarding future health was associated with NYHA Class (p<0.001), the average score of concern increasing with increasing NYHA Class. Forty-five percent of participants were aware of processes around advance care directives and plans, but only 4% had documented their wishes. There was no association between documentation and concerns regarding future health, or NYHA class. Sixty-nine percent of patients agreed that ACP should occur when patients are well. However, only 51% of patients had discussed their future health with their clinicians. Only 8% and 24% of patients were uncomfortable discussing their future health and death respectively. No information was obtained about how comfortable the cardiologists were about discussing ACP.

Conclusions: There is limited understanding of ACP among ACHD patients. Although most patients accept the value of ACP early in the patient's clinical course, few in this Australian sample documented their end-of-life care wishes. Further education of both ACHD patients and their attending clinicians toward initiating these sensitive discussions of ACP may lead to more patients documenting their wishes.

Macdonald JS, Osborne TR, Triandafilidis Z, Jeong SY, Goodwin N. 

Abstract: This study investigates bereaved carers’ experiences with end-of-life care and the factors associated with increased emergency department presentation, hospital admission and rates of hospital death in the last 90 days of life. Bereaved carers completed a modified Views of Informal Carers – Evaluation of Services – Short Form, and their responses were linked to the medical records of the decedents. The survey was sent to 1,546 people, and 246 surveys were returned (response rate 15.9%). 102 survey respondents reported their decedent had a known preference around place of death. 70/102 (68.6%) wished to die at home, but 187/246 (76.3%) died in hospital. Nevertheless, 200/243 (82.3%) of carers felt that the person died in the right place. Frequent attendance at emergency department was associated with bereaved carers feeling unsupported at home (χ² = 8.74, p < 0.05), and with higher rates of hospital death (χ² = 12.44, p < 0.05). Adequate help and support for carers at home is essential to reduce frequent emergency department attendance in the final months of life.

Marathe SP, Betts KS, Venna A, Daley M, Iyengar AJ, Cordina R, et al.

Objective: The Fontan operation is the final step in staged palliation for patients with single-ventricle physiology. It has extended their life expectancy and improved their quality of life. However, long-term complications and Fontan failure remain lifelong concerns. We aimed to use machine learning to develop a patient-specific preoperative Fontan failure risk calculator.

Methods: Patient data were obtained from the Australia and New Zealand Fontan Registry (ANZFR). The primary composite end point was Fontan failure, defined as any of death, transplant, Fontan takedown or conversion, protein-losing enteropathy, plastic bronchitis, or New York Heart Association class III/IV. To construct the risk calculator, we first used Cox regression with regularization to predict Fontan failure from 54 preoperative predictors in the ANZFR database. A regularization machine learning tool was used to automate variable selection among many predictors. We then manually added clinically relevant predictors. Six predictors (age, ventricular morphology, primary diagnosis, total anomalous pulmonary venous drainage, Fontan type, and moderate or greater atrioventricular valve regurgitation) were ultimately used in a subsequent multivariable Cox regression (without regularization) to ensure the final risk prediction model was simple and easy to interpret.

Results: Data from 1888 patients over 48 years (1975-2023) were available. The ANZFR collects perioperative and follow-up variables about each patient. After excluding patients with Fontan procedures with an atriopulmonary connection (n = 290) and missing predictors or outcome data (n = 125), data from 1473 patients were used to construct the calculator. Median age at Fontan was 4.5 years (interquartile range, 3.7, 5.6 years). Median follow-up was 11.0 years (interquartile range, 5.3, 17.8 years). Freedom from Fontan failure for the overall cohort at 10, 20, and 30 years was 92% (confidence interval [CI], 90%-93%), 83% (CI, 80%-86%), and 72% (CI, 65%-78%), respectively. External validation in an independent cohort demonstrated acceptable model performance. The risk prediction model was then implemented in a Desktop application using the Shiny library in R and used to develop the preoperative Fontan failure calculator on the basis of the 6 predictors.

Conclusions: Machine learning can be applied to "big data" from a binational Fontan Registry to develop a preoperative, patient-specific Fontan failure risk calculator. The model will continue to learn and improve as more data is added. This is a step toward personalized medicine enabling patient-specific pre-operative counselling and realistic expectations.

Thomas B, Barclay G, Mansfield K, Mullan J, Lo WA. 

Objectives: Patients in the terminal phase may require both regular medications and breakthrough medications for palliative symptom management. Breakthrough dosing can provide an objective measure of symptom management, but the relationships between symptom severity and breakthrough use in sedated patients in the terminal phase remain unclear. This study examined the relationship between symptom management and breakthrough medication use in dying patients receiving dexmedetomidine or midazolam as background sedative infusions. 

Methods: This secondary analysis of the Dexmedetomidine for the Relief of End-of-life Agitation and optiMised Sedation trial included 52 palliative care inpatients randomised to subcutaneous infusion of dexmedetomidine (0.5 µg/kg/hour) or midazolam (0.25 mg/kg/day). Breakthrough medication use was correlated with Palliative Care Problem Severity Score (PCPSS) scores (0–3) using Spearman’s coefficient. Primary analyses matched PCPSS-Pain with opioids, PCPSS-Psychological/Spiritual with sedatives and PCPSS-Other with other breakthrough medications, applying a Bonferroni correction (α=0.0083).

Results: In total, 130 patient-days were analysed (71 dexmedetomidine, 59 midazolam). Symptom severity was mild and equivalent between arms (median PCPSS scores 0–1, all p>0.05). Total breakthrough doses were similar (2.5–3 daily). In the dexmedetomidine arm, PCPSS-Pain correlated with opioid use (r=0.46, p=0.001) and PCPSS-Psychological/Spiritual with sedative use (r=0.49, p=0.003), with a nonsignificant trend for PCPSS-Other (r=0.21, p=0.17). In the midazolam arm, correlations were absent or negative (r=−0.24 to 0.068, p>0.05).

Conclusions: Dexmedetomidine patients showed significant correlations between symptom severity and breakthrough opioid or sedative use, whereas midazolam patients did not. Despite similar mild symptom scores and breakthrough needs, only dexmedetomidine demonstrated expected symptom-medication relationships. This divergence warrants further research.

Wilson M, Philip J, Hofmeyer C, Paluch A, Panozzo S, Hudson P, et al. 

Background: Despite policy and health service imperatives for public involvement to be embedded within palliative care research, this practice is not commonplace. Few empirical studies have sought to explore and evaluate models of public involvement for palliative care.

Aim: To explore experiences of public involvement within palliative care, and to identify enablers for successful models of involvement.

Design: An exploratory qualitative design was utilized. Semi-structured interviews were conducted via zoom or telephone, and interview transcripts were subjected to inductive thematic analysis.

Setting/Participants: Purposive sampling of 23 participants with experience of public involvement in palliative care or related areas, across different health institutions in Australia and the United Kingdom, including public members and public involvement program coordinators.

Results: Twelve public members and 11 program coordinators described their experience with public involvement in a palliative or related healthcare setting. Three themes emerged relating to successful involvement (1) Relationship building and maintenance : opportunities to enhance team familiarity, early involvement, consistent point of contact, and inclusion of more than one public member. (2) Clarity around goals of involvement : flexible roles and processes, ongoing communication, formal recognition of public input. (3) Training and support : mentoring opportunities, upskilling for public members and researchers. These enablers promoted a collegial atmosphere that enhanced personal and collective experiences of public involvement.

Conclusions: This study reveals enablers that potentially shape the extent and effectiveness of public involvement in palliative care. Integrating these enablers has implications for future models of public involvement in palliative care and potential for enhanced research outcomes.