Latest Australian research

Reeves SH, Ngu N, Le S, Runacres F.

We read with interest the publication by Al-Moussally et al in the September issue of BMJ Supportive and Palliative Care titled ‘Palliative care in cirrhosis of the liver’.1 This valuable work highlighted the underutilisation of specialist palliative care services in patients with end-stage liver disease (ESLD) despite their high symptom burden. The authors highlighted referral barriers, including misperceptions of palliative care, as well as health resource factors and insurance coverage.

We undertook a retrospective, longitudinal cohort study exploring the frequency and type of palliative care provided to patients attending a decompensated cirrhosis clinic in Australia. Finance is not a barrier to accessing specialist palliative care due to our universal health insurance scheme funded by taxpayers. Our preliminary data complement this article by exploring the non-financial barriers among patients with ESLD ineligible for transplant.

The primary aim of this study was to determine the proportion of patients presenting to an Australian tertiary hospital decompensated cirrhosis clinic with palliative care needs. Secondary outcomes included how many patients were appropriately referred for specialist palliative care review and determined the type of specialist palliative care received.

Sabanayagam D, Guha C, Scholes-Robertson N, Jaure A, Wong G. 

Abstract: People with kidney failure experience high symptom burden, which is associated with an increased risk of mortality, morbidity, and impaired quality of life. Symptoms are often severe and persistent, affecting many organs and causing considerable physical, psychological, and emotional distress. The causes of symptoms are often multifactorial, and the underlying pathophysiology is often poorly understood. Managing symptoms is challenging because of uncertainty regarding the use of validated patient-reported outcome measures in clinical practice and limited evidence for interventions to relieve symptoms. Addressing these challenges requires developing and validating symptom-targeted interventions and integrating symptom management strategies within a multidisciplinary framework, including nephrologists, palliative care physicians, and allied health and mental health professionals. This review provides an overview of the epidemiology and adverse impacts of symptoms in people with kidney failure. We will also provide practical guidance on selecting the appropriate symptom measures and evidence-based interventions for symptom assessment and management in kidney failure care.

Webster M, Barclay L, Parikh D, Lalor A.

Introduction: TSleep is fundamental to an individual's health, well-being and quality of life. Poor sleep and sleep disturbances are common for individuals receiving palliative care. Occupational therapists play a crucial role by effectively addressing sleep in this context. However, there has been limited research regarding the role, scope and implementation of sleep management interventions among occupational therapists within palliative care, and the needs that therapists have to support this area of practice.

Methods: An online cross-sectional survey was conducted among Australian occupational therapists with current or recent experience in palliative care. Qualitative data from open-ended response items were analysed using content analysis.

Results: Fifty-one occupational therapists (92.2% female) with an average of 7.6 years of experience working in palliative care completed the online survey. Most participants (88.2%) perceived that sleep was within the scope of the occupational therapy practice in palliative care; however, few participants indicated good/excellent knowledge of sleep or sleep assessment and intervention. Barriers to adequately addressing sleep issues included a lack of therapists' knowledge, limited understanding of the scope by other professionals, workload constraints and limited resources.

Conclusions: Occupational therapists may benefit from evidence-based resources and guidelines to address sleep issues in palliative care.

Kiely B, Travado L, Smith AL, Timeus IA, Kim SB, Haidinger R, et al.

Abstract: Advanced breast cancer (ABC) represents a significant global health challenge, not only due to its high mortality rates but also because of the profound physical, emotional, and social burden it imposes on patients. Support services - encompassing psychological, social and peer support, complementary and integrative therapies, wellness and lifestyle support, genetic counseling, survivorship programs, palliative and end-of-life care - are essential to addressing these challenges and ensuring that individuals with ABC receive holistic, person-centered care throughout their disease journey. This manuscript outlines the need for universal access to comprehensive, tailored support services to transform the landscape of ABC care, improve quality of life, and promote health equity globally. It summarizes research conducted for the ABC Global Alliance's Global Decade Report 2.0. The main findings are: a) More than half of people with ABC report never being offered support services; b) Global disparities in ABC support services persist despite policy recommendations from national cancer care plans; c) Global survey data show major gaps in ABC support service referral and utilization; d) Palliative care remains underutilized and often introduced too late in ABC care; e) Despite growth of ABC advocacy groups, healthcare provider referrals are limited. The findings from the ABC Global Alliance's Global Decade Report 2.0 have informed the development of a new ABC Global Charter. The ABC Global Charter 2.0 defines ten new achievable and measurable goals for the decade 2025-2035, aiming at improving the lives of people living with ABC worldwide.

Mazumder S, Amiruddin A.

Background: Adolescents and young adult cancer patients (AYACP) with terminal diagnoses face the challenge and additional burden of planning their end-of-life (EoL) care. Although AYACP receive a standard-of-care at EoL, the care they receive may not align with their goals. As such, the characteristics of their goals-of-care are poorly understood.

Aims: This systematic review aimed to describe AYACP desired level and nature of involvement in EoL goals-of-care decision-making and determine their barriers and facilitators.

Methods: To address this, an extensive search across PsycINFO, Web of Science, PubMed, and Scopus databases was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analysis guidelines, yielding 23 studies from an initial 4211. The Mixed Methods Appraisal Tool was used to assess quality and risk of bias, while a thematic analysis was conducted to conceptualise AYACP EoL goals-of-care, which were presented through a narrative synthesis.

Results: Four key themes of AYACP EoL goals-of-care emerged: (1) preference for comfort-based care, (2) preference for life-prolonging interventions, (3) understanding disease prognosis and involvement in legacy-building, and (4) choosing not to decide and delegation of decision-making. AYACP reported that limited knowledge of available options was a barrier to decision-making, while exposure to interventions and EoL care information facilitated EoL goals-of-care discussions with family and healthcare professionals.

Conclusion: This review emphasises the diverse and evolving nature of AYACP goals-of-care and invites healthcare professionals to integrate early and regular discussions along with advance care planning to enhance quality of life and informed EoL decision-making.