Search

Background: While co-design offers potential for equitably engaging First Nations Australians in findings solutions to redressing prevailing disparities, appropriate applications of co-design must align with First Nations Australians’ culture, values, and worldviews. To achieve this, robust, culturally grounded, and First Nations-determined principles and practices to guide co-design approaches are required. Aims: This project aimed to develop a set of key principles and best practices for co-design in health with First Nations Australians. Methods: A First Nations Australian co-led team conducted a series of Online Yarning Circles (OYC) and individual Yarns with key stakeholders to guide development of key principles and best practice approaches for co-design with First Nations Australians. The Yarns were informed by the findings of a recently conducted comprehensive review, and a Collaborative Yarning Methodology was used to iteratively develop the principles and practices. Results: A total of 25 stakeholders participated in the Yarns, with 72% identifying as First Nations Australian. Analysis led to a set of six key principles and twenty-seven associated best practices for co-design in health with First Nations Australians. The principles were: First Nations leadership; Culturally grounded approach; Respect; Benefit to community; Inclusive partnerships; and Transparency and evaluation. Conclusions: Together, these principles and practices provide a valuable starting point for the future development of guidelines, toolkits, reporting standards, and evaluation criteria to guide applications of co-design with First Nations Australians.

Background: Australia’s social, structural, and political context, together with the continuing impact of colonisation, perpetuates health care and outcome disparities for First Nations Australians. A new approach led by First Nations Australians is required to address these disparities. Co-design is emerging as a valued method for First Nations Australian communities to drive change in health policy and practice to better meet their needs and priorities. However, it is critical that co-design processes and outcomes are culturally safe and effective. Aims: This project aimed to identify the current evidence around optimal approaches to co-design in health with First Nations Australians. Methods: First Nations Australian co-led team conducted a comprehensive review to identify peer-reviewed and grey literature reporting the application of co-design in health-related areas by and with First Nations Australians. A First Nations Co-Design Working Group (FNCDWG) was established to guide this work and team.A Collaborative Yarning Methodology (CYM) was used to conduct a thematic analysis of the included literature. Results: After full-text screening, 99 studies were included. Thematic analysis elicited the following six key themes, which included 28 practical sub-themes, relevant to co-design in health with First Nations Australians: First Nations Australians leadership; Culturally grounded approach; Respect; Benefit to First Nations communities; Inclusive partnerships; and Evidence-based decision making. Conclusion: The findings of this review provide a valuable snapshot of the existing evidence to be used as a starting point to guide appropriate and effective applications of co-design in health with First Nations Australians.

This position statement describes the recommendations of the Clinical Oncology Society of Australia (COSA) regarding management of cancer‐related malnutrition and sarcopenia. A multidisciplinary working group completed a review of the literature, focused on evidence‐based guidelines, systematic reviews and meta‐analyses, to develop recommendations for the position statement. National consultation of the position statement content was undertaken through COSA members. All people with cancer should be screened for malnutrition and sarcopenia in all health settings at diagnosis and as the clinical situation changes throughout treatment and recovery. People identified as “at risk” of malnutrition or with a high‐risk cancer diagnosis or treatment plan should have a comprehensive nutrition assessment; people identified as “at risk” of sarcopenia should have a comprehensive evaluation of muscle status using a combination of assessments for muscle mass, muscle strength and function. All people with cancer‐related malnutrition and sarcopenia should have access to the core components of treatment, including medical nutrition therapy, targeted exercise prescription and physical and psychological symptom management. Treatment for cancer‐related malnutrition and sarcopenia should be individualised, in collaboration with the multidisciplinary team (MDT), and tailored to meet needs at each stage of cancer treatment. Health services should ensure a broad range of health care professionals across the MDT have the skills and confidence to recognise malnutrition and sarcopenia to facilitate timely referrals and treatment. The position statement is expected to provide guidance at a national level to improve the multidisciplinary management of cancer‐related malnutrition and sarcopenia.

Cancer-related malnutrition and sarcopenia have severe negative consequences including reduced survival and reduced ability to complete treatment. This study aimed to determine the awareness, perceptions and practices of Australian oncology clinicians regarding malnutrition and sarcopenia in people with cancer. A national cross-sectional survey of Australian cancer clinicians was undertaken between November 2018 and January 2019. The 30-item online purpose-designed survey was circulated through professional organizations and health services. The 111 participants represented dietetic (38%), nursing (34%), medical (14%) and other allied health (14%) clinicians. Overall, 86% and 88% clinicians were aware of accepted definitions of malnutrition and sarcopenia, respectively. Perception of responsibility for identification of these conditions varied across participants, although 93% agreed this was a component of their role. However, 21% and 43% of clinicians had limited or no confidence in their ability to identify malnutrition and sarcopenia, respectively. Common barriers to the identification and management of malnutrition were access to the tools or skills required and a lack of services to manage malnourished patients. Common barriers to identification of sarcopenia were lack of confidence and lack of services to manage sarcopenic patients. Enablers for identification and management of malnutrition and sarcopenia were variable; however, training and protocols for management ranked highly. While awareness of the importance of cancer-related malnutrition and sarcopenia are high, participants identified substantial barriers to delivering optimal nutrition care. Guidance at a national level is recommended to strengthen the approach to management of cancer-related malnutrition and sarcopenia.

Introduction Engaging with patients and the public (consumers and community) enhances the relevance of cancer control developments; however, challenges remain to integrate into processes. Medical and other professional societies are well-positioned to foster and endorse best practice. Methods Between October and December 2021, the Multinational Association of Supportive Care in Cancer (MASCC) conducted a global consultation with those who identified as “people affected by cancer”. Recruitment to an online cross-sectional survey was by a combination of purposive and convenience sampling to determine preferred terminologies and experiences with MASCC and other cancer-related societies. Results The survey was completed by 343 respondents from 29 countries, a majority being female (78.1%) and younger than 60 years of age (62.1%). Respondents preferred to be identified as ‘patient’ from a set of defined terms; however, this only accounted for 49–67% of selected response across geographical regions. Only 22.2% of respondents had engaged previously with MASCC, of whom 90.8% reported a positive experience through involvement with education and information, networking and collaboration, and practice guidelines. Respondents perceived areas of opportunity as early involvement in decision-making, educational initiatives, open communication, and information sharing. Across all geographical regions, responders chose a preference to contribute to future consumer research (53.0%), policy (31.7%) or consumer engagement activities (56.9%) including participation in a conference session (65.0%) or patient day (47.9%). Conclusions This survey provides a first insight into how consumers wish to engage with MASCC. These values will be embedded into a strategy that aims for effective and sustainable partnerships with multinational consumers.

Purpose: To evaluate the utility of a telephone outcall program for cancer caregivers and to examine longitudinal changes in their distress levels and supportive care needs. Methods: As part of the PROTECT trial, caregivers assigned to the intervention arm (N = 108) received three telephone outcalls from a Cancer Council 13 11 20 nurse at three time points (7–10 days post-randomization, 1 and 4 months later). During each call, caregivers were screened for distress using the Distress Thermometer (range: 0–10) then six supportive care issues were raised for discussion. Participants completed a utility survey 1 month post-intervention. Results: The outcall program was highly acceptable and perceived as beneficial by caregivers. Overall, 95% reported it was worth their time to take part in the outcall program and 82% stated that the program was very relevant to them. Level of distress and impact of distress decreased over time (p = 0.0031, p < 0.0001, respectively). Average call duration decreased over time (p < 0.0001) and was longer for female than male caregivers (p = 0.0009). The frequency of caregivers discussing issues related to psychological distress (p = 0.0003), health literacy (p < 0.0001), financial (p = 0.0014), and practical concerns (p = 0.0121) decreased over time. Psychological distress was more often discussed by female than male caregivers (p = 0.0153), and family issues more often by younger (< 55 years) than older caregivers (p = 0.0071). Conclusions: Utility of this outcall program was high. Caregivers’ level of distress and unmet needs decreased over time. Gender and age differences emerged, which warrants the need for tailored support. Further research is necessary to identify the best method of improving access to 13 11 20 services for caregivers Refereed/Peer-reviewed

Background Informal caregivers provide extended support to people with cancer but they receive little support from the health care system to assist them in their caring role. The aim of this single-blind, multi-centre, randomised controlled trial was to test the efficacy of a telephone outcall program to reduce caregiver burden and unmet needs, and improve psychological well-being among cancer caregivers, as well as evaluating the potential impact on patient outcomes. Methods Cancer patient/caregiver dyads (N = 216) were randomised to a telephone outcall program (n = 108) or attention control group (n = 108). The primary outcome was self-reported caregiver burden. Secondary endpoints included depressive symptoms, unmet needs, self-esteem, self-empowerment, and health literacy. Data were collected at baseline and at both 1 and 6 months post-intervention. An intention to treat analysis was performed. Results The intervention had no effect on the primary outcome (caregiver burden), but reduced the number of caregiver unmet needs (intervention group baseline, mean = 2.66, 95% confidence interval (CI) [1.91–3.54]; intervention group 1 month post intervention, mean = 0.85, 95%CI [0.42–1.44]; control group baseline, mean = 1.30 95%CI [0.80–1.94], control group 1 month post intervention, mean = 1.02 95%CI [0.52–1.69]; p = 0.023). For caregivers at risk for depression, the intervention had a significant effect on caregivers’ confidence in having sufficient information to manage their health (p = 0.040). No effects were found for patients’ depressive symptoms, unmet needs, self-empowerment, and other health literacy domains. Conclusions While caregiver burden was not reduced, the outcall program was effective in reducing unmet needs in caregivers. Provision of cancer information and support via a telephone service may represent a feasible approach to reducing unmet needs among cancer caregiver populations. Trial registration ACTRN12613000731796; prospectively registered on 02/07/2013. Electronic supplementary material The online version of this article (10.1186/s12885-017-3961-6) contains supplementary material, which is available to authorized users.

Background Healthy Living after Cancer (HLaC) was a national dissemination and implementation study of an evidence-based lifestyle intervention for cancer survivors. The program was imbedded into existing telephone cancer information and support services delivered by Australian state-based Cancer Councils (CC). We report here the reach, effectiveness, adoption, implementation, and maintenance of the program. Methods In this phase IV study (single-group, pre-post design) participants - survivors of any type of cancer, following treatment with curative intent - received up to 12 nurse/allied health professional-led telephone health coaching calls over 6 months. Intervention delivery was grounded in motivational interviewing, with emphasis on evidence-based behaviour change strategies. Using the RE-AIM evaluation framework, primary outcomes were reach, indicators of program adoption, implementation, costs and maintenance. Secondary (effectiveness) outcomes were participant-reported anthropometric, behavioural and psychosocial variables including: weight; physical activity; dietary intake; quality-of-life; treatment side-effects; distress; and fear of cancer recurrence and participant satisfaction. Changes were evaluated using linear mixed models, including terms for timepoint (0/6 months), strata (Cancer Council), and timepoint x strata. Results Four of 5 CCs approached participated in the study. In total, 1183 cancer survivors were referred (mostly via calls to the Cancer Council telephone information service). Of these, 90.4% were eligible and 88.7% (n = 791) of those eligible consented to participate. Retention rate was 63.4%. Participants were mostly female (88%), aged 57 years and were overweight (BMI = 28.8 ± 6.5 kg/m2). Improvements in all participant-reported outcomes (standardised effect sizes of 0.1 to 0.6) were observed (p Conclusions This telephone-delivered lifestyle intervention, which was feasibly implemented by Cancer Councils, led to meaningful and statistically significant improvements in cancer survivors’ health and quality-of-life at a relatively low cost. Trial registration Australian and New Zealand Clinical Trials Registry (ANZCTR) - ACTRN12615000882527 (registered on 24/08/2015).

Informal caregivers are important in supporting people with cancer due to the ageing population, improvements in diagnosis and treatment, and a shift towards home-based cancer care.[1, 2] The ageing of the population, improvements in diagnosis and treatment and the shift towards home-based cancer care places significant burden on informal caregivers. Caregivers frequently experience several negative impacts associated with the care provision including psychological and physical morbidity.[3-5] These negative impacts have informed several intervention studies aiming to improve caregiver outcomes.[6-8] The body of intervention research is diverse; for example, there is a lack of consensus on how to define caregivers,[9] leading to a significant variance in samples between studies. Interventions can also range in type, dose, format, and content [6], as well as their focus with noted categories including psychoeducational, skills training or therapeutic counselling.[7] Similarly, the range of outcomes studied and reported has also been broad, spanning categories such as quality of life, emotional support, communication and relational intimacy, and caregiving tasks.[6] Furthermore, some studies explore patient outcomes in the context of the type of caregiving they receive.[10] Overall, there have been a range of approaches trialled involving different groups, aiming to improve health outcomes.

Background Taste changes are commonly reported by people with cancer undergoing radio- or chemotherapy. Taste changes may compromise dietary intake and nutritional status. Objective To understand whether or not taste change is associated with cancer diagnosis or treatment modality in adults. Methods A systematic literature search up to December 31, 2019, was conducted using PubMed, Embase, and PsycInfo (International Prospective Register of Systematic Reviews protocol no. CRD42019134005). Studies in adults with cancer objectively assessing the effect of a cancer diagnosis or chemotherapy and/or radiotherapy treatment on taste function compared with healthy controls or within participant changes were included. Additional outcomes were food liking, appetite, dietary intake, nutritional status, and body composition. Reference lists of relevant articles were searched to identify additional articles. Quality was assessed using the Academy of Nutrition and Dietetics quality criteria checklist. Results A total of 24 articles were included, one of which consisted of two studies that reported the effects of radiotherapy and chemotherapy separately. From the total 25 studies reported in 24 published articles, 14 studies examined effects of radiotherapy, and remaining 11 studies examined chemotherapy. There is limited evidence of a cancer diagnosis per se contributing to taste dysfunction. Impaired taste function was reported in almost all radiotherapy studies, occurring as early as Week 3 of treatment and lasting for 3 to 24 months posttreatment. During chemotherapy, impairment of taste function was less consistently reported, occurring as early as the first few days of chemotherapy, and persisting up to 6 months posttreatment. Taxane-based chemotherapy was reported to affect taste function more than other treatments. Several studies reported reduced liking for food, appetite, and dietary intake. Only one study reported nutritional status of participants, finding no association between taste function and nutritional status. No studies examined associations between taste changes and body composition. Conclusions This review highlights the importance of considering treatment modality in practice. Research is required to identify factors contributing to taste alteration and to inform evidence-based interventions.