Patsy Yates

Background: Global ageing is expected to increase demand for palliative care services. As older people remain underserved by these services, interorganisational strategies that support integrated, person-centred care delivery are needed. Aim: To identify elements of, and outcomes related to, interorganisational linkages in the context of palliative care services and teams, aged care providers and consumers (older people and their informal carers). Design: Systematic review with narrative synthesis. Studies were independently dual quality appraised using the Mixed Methods Appraisal Tool. Data sources: Electronic databases PubMed, MEDLINE, CINAHL, PsycINFO, and CareSearch were searched 2000–August 2025. Eligible studies were peer-reviewed original research (except single-case studies) reporting interorganisational linkage strategies connecting palliative care services/teams and aged care providers. Results: Thirty-two studies (across 37 publications) were included. Interorganisational linkage strategies were grouped as: (1) Designated Linkage Workers, (2) Communication Pathways, and (3) Collaborative Care Processes. Outcomes were reported for aged care providers (such as strengthened interprofessional communication) and their staff (increased confidence), health systems (reduced acute care utilisation), and for older people who were nearing the end of life (less symptom distress). Self-reported outcomes for consumers (improved quality of life) were minimally reported. Twelve models of care were reported using components across all three linkage categories. Conclusion: Three key elements of interorganisational linkage strategies were identified. Strategic implementation of interorganisational linkage strategies can enhance cross-sector collaboration, support care integration, and improve outcomes for consumers, aged care providers, and the health system generally.

Purpose: A nationwide nurse-led telehealth case management program was established providing personalised supportive care to individuals and families experiencing ovarian cancer. The program was evaluated using the RE-AIM framework. This paper focuses on the effectiveness findings of the evaluation. Methods: Using mixed methods design, participants completed four surveys over 12 months assessing symptom burden, psychological distress, supportive care needs, quality of life, and self-efficacy. Service experiences were further explored through interviews. Results: Of the 652 individuals enrolled in the program, 112 (17%) participated in the evaluation. Predominant baseline moderate to severe symptoms were fatigue (65%); anxiety (56%); and sleep issues (50%). Key unmet needs included: uncertainty about the future (54%); fear of cancer spread (48%); and anxiety (42%). 43% reported high distress; 27% lacked confidence self-managing fatigue, 23% self-managing distress. All participants received symptom and needs assessment; 80% received information support, and one-third accessed specialised psychosocial care. Those with greater symptom burden, distress, lower quality of life and self-efficacy at baseline received more services. Over 12 months, overall wellbeing and satisfaction with information improved significantly. 30 interview participants consistently valued the program for: being seen and heard as a whole person; trusted information and advice; meaningful emotional support; and flexible and timely services. Conclusion: Participation in this nurse-led telehealth program was associated with improved outcomes and positive experiences among individuals with ovarian cancer who are at high risk of poorer outcomes. These findings support continued investment in person-centred tailored supportive care delivered via telehealth prioritising emotional wellbeing, symptom management, and quality of life.

Aim: This study aimed to develop recommendations for acceptable physical and psychological clinical indicators of acute deterioration and strategies to support sustained adoption of an approach to detecting and responding to acute deterioration in long‐term care. Background: Previous studies have trialled programmes to reduce avoidable hospital transfers through early detection of acute deterioration in long‐term care. However, variability in outcomes and implementation experiences highlights differences in the essential components of these approaches. Design: Three‐round Delphi process. Methods: The Delphi process conducted between September 2022 and January 2023 included a 22‐member Australian expert panel to elicit consensus and to generate recommendations. Delphi participants were asked to rate the potential items on a 9‐point scale for level of importance (Part A), level of priority of action (Part B) and level of acceptability (Part C). The mean, standard deviation (SD) and I‐CVI of each item were calculated. Clinical indicators with mean ≥ 7, I‐CVI ≥ 0.78 were considered to have a good degree of agreement, appropriateness and relevance and were deemed acceptable for inclusion. Results: Participants completed a two‐part online survey in Round 1, and three‐part surveys in Rounds 2 and 3. Round 1, Part A included 44 clinical indicators. On completion of Round 3, 36 items remained. Care pathways in response to acute deterioration ( n = 20) were included in Part B. After Round 3, 17 care pathways remained. There was agreement in Part C that communication aides, education and mentor programmes were necessary as viable strategies to support sustained adoption. Conclusion: Detecting the early warning signs of acute deterioration will have significant outcomes for residents, staff and health care services.

Aim: This study aimed to identify diverse ways nonspeaking and speaking children are involved in clinical encounters. Methods: The study analysed video recordings of paediatric palliative care encounters in Australia. Conversation analytic coding methods were used to identify embodied (e.g., gesture) and vocal (e.g., grunting) modes of interaction used by all children and lexical verbalisations (i.e., words) used by speaking children. Analysis focused on interactions between children and adults (both family members and clinicians). Results: A total of 38 child patients (seven speaking, 31 nonspeaking), 56 family members and 50 clinicians participated across 60 video‐recorded encounters with the child patient present. Analysis identified 1737 spates (i.e., periods) of interaction with child patients. Nonspeaking children were involved in a median of 38.0 spates of involvement per hour and speaking children in a median of 58.7 spates per hour. Observed practices of nonspeaking and speaking children included adult clinicians and family members doing something with a child without speaking, identifying the child as a recipient of some action, assessing the child, telling the child something, and physically tending to the child with verbal commentary. Clinicians and adult family members more often initiated spates of involvement (62.9%) than children themselves and were more responsive to spates initiated by nonspeaking children (89.6%) than speaking children (79.3%). Conclusions: This study demonstrates how children—including nonspeaking children—are regularly involved in clinical encounters. The study findings indicate a need to avoid exclusively focusing on verbal communication, to appreciate the diverse ways that children can be involved in clinical encounters about them.

Introduction: Breast cancer is the most commonly diagnosed cancer among women worldwide. Survivors often experience physical and psychological effects arising from breast cancer and its treatment, which can last months and years, adversely impacting quality of life. As the number of early breast cancer survivors increases, models of specialist-led follow-up care in hospital settings are not sustainable and evidence suggests that they may not meet survivors’ needs. Nurse-enabled, shared-care, follow-up models between cancer specialist and primary care teams have potential to address this need. Methods and analysis: The proposed research is a multicentre, prospective, pragmatic, stepped-wedge cluster-randomised trial designed to test the effectiveness and implementation of IBIS-Survivorship , a follow-up care model for patients with early breast cancer who have completed primary treatment. The IBIS-Survivorship intervention involves a nurse-led consultation, development of a Survivorship Care Plan and case-conferencing between a breast care nurse and the patient’s primary care provider. This study seeks to recruit 1079 breast cancer survivors across six cancer centres (clusters) in Australia. Health-related quality of life at 12 months assessed by the Functional Assessment of Cancer Therapy - Breast Cancer questionnaire will be the primary endpoint, along with a range of patient-reported outcomes, safety indicators and cost-effectiveness measures as secondary endpoints. General and generalised linear mixed models will be used to assess the effectiveness of the intervention versus usual care. Implementation and process outcomes will be assessed using the Reach Effectiveness Adoption Implementation Maintenance framework. Ethics and dissemination: Ethical approval was provided by the Metro South Hospital and Health Service Human Research Ethics Committee (HREC/2020/QMS/59892) and reciprocally across the other five trial sites under National Mutual Acceptance arrangements. Results will be disseminated through peer-reviewed academic journal publications and presentations at national and international conferences. Trial registration: Australia and New Zealand Clinical Trials Registry (ANZCTR) Trial ID: ACTRN12621000188831.

Background: Surgical resection is the primary treatment for gastrointestinal (GI) cancers, but postoperative skeletal muscle loss (SML) is common and linked to poor prognosis. This study aims to identify patterns of muscle change, examine its association with quality of life (QoL), and explore predictors of SML in the first 3 months. Patients and Methods: A prospective cohort study was conducted on patients newly diagnosed with GI cancer and undergoing surgery in China between September 2021 and May 2022. Skeletal muscle mass (SMM) and QoL were assessed at admission, 7 days, 1 month, and 3 months post-surgery. Demographic, clinical data, and biomarkers were collected. Missing data were imputed using multiple imputation. Data were analyzed using growth mixture modelling, bivariate analyses, and logistic regression. Results: A total of 483 patients completed baseline assessment. Of the 242 patients with complete muscle assessments, 92% experienced SML. Three distinct patterns of muscle change were identified: 57% had normal preoperative SMM with mild postoperative SML, 16% had low preoperative SMM with moderate SML, and 27% had normal preoperative mass but severe postoperative SML. Moderate/severe SML was associated with more postoperative complications, poorer health, and higher symptom burden. Independent predictors included advanced age, preoperative sarcopenia, advanced cancer stage, and low prognostic nutrition index (PNI ≤ 45). The results did not change when using imputed values. Conclusions: Although SML is prevalent, patterns of muscle change are heterogeneous among patients. Advanced age, preoperative sarcopenia, advanced cancer stage, and cancer-related inflammation are predictors for moderate/severe SML, highlighting the need for early detection and management.

Background: Advanced cancer significantly impacts patients’ and family caregivers’ quality of life. When patients and caregivers are supported concurrently as a dyad, the well-being of each person is optimized. Family, Outlook, Communication, Uncertainty, Symptom management (FOCUS) is a dyadic, psychoeducational intervention developed in the United States, shown to improve the well-being and quality of life of patients with advanced cancer and their primary caregivers. Originally, a nurse-delivered in-person intervention, FOCUS has been adapted into a self-administered web-based intervention for European delivery. Objective: The aims of this study are to (1) adapt FOCUS to the Australian context (FOCUSau); (2) evaluate the effectiveness of FOCUSau in improving the emotional well-being and self-efficacy of patients with advanced cancer and their primary caregiver relative to usual care control group; (3) compare health care use between the intervention and control groups; and (4) assess the acceptability, feasibility, and scalability of FOCUSau in order to inform future maintainable implementation of the intervention within the Australian health care system. Methods: FOCUS will be adapted prior to trial commencement, using an iterative stakeholder feedback process to create FOCUSau. To examine the efficacy and cost-effectiveness of FOCUSau and assess its acceptability, feasibility, and scalability, we will undertake a hybrid type 1 implementation study consisting of a phase 3 (clinical effectiveness) trial along with an observational implementation study. Participants will include patients with cancer who are older than 18 years, able to access the internet, and able to identify a primary support person or caregiver who can also be approached for participation. The sample size consists of 173 dyads in each arm (ie, 346 dyads in total). Patient-caregiver dyad data will be collected at 3 time points—baseline (T0) completed prerandomization; first follow-up (T1; N=346) at 12 weeks post baseline; and second follow-up (T2) at 24 weeks post baseline. Results: The study was funded in March 2022. Recruitment commenced in July 2024. Conclusions: If shown to be effective, this intervention will improve the well-being of patients with advanced cancer and their family caregivers, regardless of their location or current level of health care support. Trial Registration: ClinicalTrials.gov NCT06082128; https://clinicaltrials.gov/study/NCT06082128 International Registered Report Identifier (IRRID): PRR1-10.2196/55252

This chapter describes a design thinking workshop in a different context to most HEAL projects—that of a Palliative Care ward in a private hospital. The design team used various arts-based approaches, including empathy mapping, idea storming, and persona development to help staff take a positive approach to re-imagining how they could provide exceptional service to their consumers throughout their palliative care and end-of-life experience. The results showed that even small changes can make a big difference at the end of someone’s life.