'Share your views'-international consultation informs a patient engagement strategy for the Multinational Association of Supportive Care in Cancer.

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.

Translating research into practice: outcomes from the Healthy Living after Cancer partnership project.

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 < 0.001). The program delivery costs were on average AU$427 (US$296) per referred cancer survivor. 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).

Awareness, perceptions and practices regarding cancer-related malnutrition and sarcopenia: a survey of cancer clinicians.

PURPOSE: 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. METHODS: 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. RESULTS: 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. CONCLUSION: 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.

A systematic review of cancer caregiver interventions: Appraising the potential for implementation of evidence into practice.

OBJECTIVE: nformal caregivers provide substantial support for people living with cancer. Previous systematic reviews report on the efficacy of cancer caregiver interventions but not their potential to be implemented. The aim of this systematic review was to explore the potential for cancer caregiver interventions to be implemented into practice. METHODS: We searched three electronic databases to identify cancer caregiver interventions on 5 January 2018. We operationalised six implementation outcomes (acceptability, adoption, appropriateness, feasibility, fidelity, and costs) into a tool to guide data extraction. RESULTS: The search yielded 33 papers (27 papers from electronic databases and six papers from other sources) reporting on 26 studies that met review criteria. Fewer than half the studies (46%) contained evidence about the acceptability of interventions from caregivers' perspectives; only two studies (8%) included interventions developed with input from caregivers. Two studies (8%) addressed potential adoption of interventions, and no studies discussed intentions, agreement, or action to implement interventions into practice. All studies reported on intervention appropriateness by providing a rationale for the interventions. For feasibility, on average less than one-third of caregivers who were eligible to be involved consented to participate. On fidelity, whether interventions were conducted as intended was reported in 62% of studies. Cost data were reported in terms of intervention delivery, requiring a median time commitment of staff of 180 minutes to be delivered. CONCLUSIONS: Caregiver intervention studies lack components of study design and reporting that could bridge the gap between research and practice. There is enormous potential for improvements in cancer caregiver intervention study design to plan for future implementation.

Efficacy of a telephone outcall program to reduce caregiver burden among caregivers of cancer patients [PROTECT]: a randomised controlled trial.

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.

A telephone outcall program to support caregivers of people diagnosed with cancer: utility, changes in levels of distress, and unmet needs.

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.

Integrating referral to community-based cancer information and support services in a hospital setting.

PURPOSE: To implement and evaluate a hospital-based referral mechanism to increase patient uptake of community-based cancer information and support services. Feasibility and acceptability of the intervention and education program was evaluated. Changes in usage of Cancer Council Victoria's cancer information and support telephone line were investigated. METHODS: A 6-month study was conducted in one metropolitan and one regional cancer treatment hospital. Clinicians attended an education session regarding referral mechanisms to Cancer Council support services. Clinicians completed a questionnaire, and consenting patients participated in a semi-structured telephone interview for the project evaluation. The number of calls made from patients at study sites was monitored. RESULTS: Fifty-two clinicians were trained and referred a total of 430 patients to the cancer information and support service during the study period. Calls from patients increased by up to 100% per month from baseline following the implementation of the referral mechanism. Staff evaluations showed support for the referral mechanism and its incorporation into routine practice. Interviews were conducted with 45 patients; most remembered receiving the referral and were positive towards the intervention. Common reasons patients gave for not acting on the referral included forgetting, lack of need, timing and burden of information. CONCLUSIONS: There is preliminary evidence that this intervention increases awareness and uptake of community-based cancer information and support services. Ongoing clinician education and improvements in patient-clinician communication are important for effective translation from referral to service uptake. Consideration of the most appropriate time in a patients' care trajectory to introduce a referral is warranted.

Does implementation matter if comprehension is lacking? A qualitative investigation into perceptions of advance care planning in people with cancer.

PURPOSE: While advance care planning holds promise, uptake is variable and it is unclear how well people engage with or comprehend advance care planning. The objective of this study was to explore how people with cancer comprehended advance care plans and examine how accurately advance care planning documentation represented patient wishes. METHODS: This study used a qualitative descriptive design. Data collection comprised interviews and an examination of participants' existing advance care planning documentation. Participants included those who had any diagnosis of cancer with an advance care plan recorded: Refusal of Treatment Certificate, Statement of Choices, and/or Enduring Power of Attorney (Medical Treatment) at one cancer treatment centre. RESULTS: Fourteen participants were involved in the study. Twelve participants were female (86%). The mean age was 77 (range: 61-91), and participants had completed their advance care planning documentation between 8 and 72 weeks prior to the interview (mean 33 weeks). Three themes were evident from the data: incomplete advance care planning understanding and confidence, limited congruence for attitude and documentation, advance care planning can enable peace of mind. Complete advance care planning understanding was unusual; most participants demonstrated partial comprehension of their own advance care plan, and some indicated very limited understanding. Participants' attitudes and their written document congruence were limited, but advance care planning was seen as helpful. CONCLUSIONS: This study highlighted advance care planning was not a completely accurate representation of patient wishes. There is opportunity to improve how patients comprehend their own advance care planning documentation.

Using Webinars for the Education of Health Professionals and People Affected by Cancer: Processes and Evaluation.

Technology provides an opportunity to engage with a variety of audiences to provide cancer education, information and support. Webinars are one such format that allow live presentations by experts that can be accessed online, from people's homes or other convenient locations. In 2015, Cancer Council Victoria (CCV) undertook a program of work to design and evaluate the effectiveness of a suite of webinars: four designed for people affected by cancer and two for health professionals. Webinars included a series of expert presentations, a panel discussion and an interactive component where participants posed questions to the panel. Evaluation included analysis of online metrics and a post-event survey covering experience and satisfaction with the webinar, self-reported changes in knowledge of key webinar concepts and confidence to discuss concepts with health professionals or patients. A total of 438 people participated in the webinars (41.5% of 1056 registrations), and 207 post-event surveys were completed by participants (47.3%). Overall, 90.1% indicated that webinar content was relevant to their interests and needs. Self-ratings of knowledge, awareness of resources and confidence to discuss webinar topics increased after the webinar. The majority (63.9%) had not participated in a webinar before, and 92.6% were interested in participating in future webinars. Over half of respondents (52.8%) had not accessed CCV resources before. This work provided a new opportunity to consolidate consistency of delivery and evaluation of webinars, demonstrating they are an effective, acceptable, accessible and sustainable vehicle for delivering information and support to health professionals and people affected by cancer.

Exploring the rationale, experience and impact of using Cancer Information and Support (CIS) services: an international qualitative study.

PURPOSE: The aim of this study was to develop an in-depth understanding of the rationale, experiences, evaluation and outcomes of using Cancer Information and Support (CIS) services in Australia, the UK and USA. METHODS: Semi-structured interviews were used to gather data between November 2015 and January 2016. Telephone interviews were recorded, de-identified, transcribed and thematically analysed. Ten users from each of three international CIS services (n = 30 in total) were recruited. Participants were eligible for inclusion if they had utilised the CIS in 2015 via telephone contact with a cancer nurse and identified as a patient or cancer survivor, or friend or family member of such a person. RESULTS: Four major themes were derived and included a total of 25 sub-themes. Key themes included (i) drivers for access, (ii) experience of the service, (iii) impact and (iv) an adjunct to cancer treatment services. CONCLUSIONS: Cancer Information and Support nurses internationally act as expert navigators, educators and compassionate communicators who 'listen between the lines' to enable callers to better understand and contextualise their situation and discuss it with their healthcare team and family and friends. Use of the service can result in reduced worry, extend support repertoires and enable use of new knowledge and language as a tool to getting the most from the healthcare team. The positioning of CIS alongside cancer treatment services aids fuller integration of supportive care, benefiting both patients and clinicians.

Healthy Living after Cancer: a dissemination and implementation study evaluating a telephone-delivered healthy lifestyle program for cancer survivors.

BACKGROUND: Given evidence shows physical activity, a healthful diet and weight management can improve cancer outcomes and reduce chronic disease risk, the major cancer organisations and health authorities have endorsed related guidelines for cancer survivors. Despite these, and a growing evidence base on effective lifestyle interventions, there is limited uptake into survivorship care. METHODS/DESIGN: Healthy Living after Cancer (HLaC) is a national dissemination and implementation study that will evaluate the integration of an evidence-based lifestyle intervention for cancer survivors into an existing telephone cancer information and support service delivered by Australian state-based Cancer Councils. Eligible participants (adults having completed cancer treatment with curative intent) will receive 12 health coaching calls over 6 months from Cancer Council nurses/allied health professionals targeting national guidelines for physical activity, healthy eating and weight control. Using the RE-AIM evaluation framework, primary outcomes are service-level indicators of program reach, adoption, implementation/costs and maintenance, with secondary (effectiveness) outcomes of patient-reported anthropometric, behavioural and psychosocial variables collected at pre- and post-program completion. The total participant accrual target across four participating Cancer Councils is 900 over 3 years. DISCUSSION: The national scope of the project and broad inclusion of cancer survivors, alongside evaluation of service-level indicators, associated costs and patient-reported outcomes, will provide the necessary practice-based evidence needed to inform future allocation of resources to support healthy living among cancer survivors. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry (ANZCTR)--ACTRN12615000882527 (registered on 24/08/2015).

Dietary experiences and support needs of women who gain weight following chemotherapy for breast cancer.

PURPOSE: Weight gain is common but poorly understood in women receiving chemotherapy for breast cancer. Overweight and obesity are associated with other co-morbidities, reduced self-esteem and an increased risk of cancer recurrence. The purpose of this study was to explore the experiences, dietary information and support needs of women who gain weight during chemotherapy treatment. METHODS: This study used a qualitative approach to explore the experiences of women from three Melbourne breast cancer clinics. Those who gained weight during the period of enrolment in a cohort study of chemotherapy-related taste changes were invited to participate in this qualitative interview study. Eligibility for inclusion was a gain in body weight between the commencement of chemotherapy and 2 months after its completion. Semi-structured interviews explored changes in diet, physical activity patterns, weight changes, dietary information and support needs and sources. Thematic analysis of the interview data was performed. RESULTS: Seventeen women were interviewed. Three key themes emerged from the following data: (i) undesirable impacts of cancer treatment on diet and physical activity, (ii) surprise and concern associated with changes to weight and diet and (iii) insufficient dietary information and support. CONCLUSIONS: This study has described the practical and informational dietary support needs of women undergoing chemotherapy for breast cancer and reasons for dietary change. There may be gaps in information and support provision after diagnosis in the areas of weight management, nutrition-related side effects of chemotherapy and healthy eating. Models of dietetic practice and the provision of tailored dietary information should be explored.

The influence of pediatric cancer treatment on taste perception and food hedonics: a systematic review.

CONTEXT: Children with cancer are at risk of poor nutritional status during treatment and into survivorship. Objectively measured taste perception and self-reported food hedonics are 2 factors that may influence food intake. OBJECTIVE: This 2-armed systematic review examined whether chemotherapy and radiotherapy affect (1) taste perception and (2) hedonic experiences of children and survivors of childhood cancer. DATA SOURCE: A 2-armed systematic literature search was conducted in the Medline, CINAHL, Embase, and PsychInfo database until June 2022. The effects of cancer treatment on objective taste perception or food hedonics (ie, food liking or aversion and appetite) were examined. DATA EXTRACTION: Peer-reviewed articles published in English of studies that included children (aged <18 years) or survivors of childhood cancer (any age) were reviewed. Risk of bias was determined using the Evidence Analysis Library by the Academy of Nutrition and Dietetics. DATA ANALYSIS: A total of 1417 articles in the taste search arm and 3862 articles in the hedonics search arm were identified. Of these, 9 and 4 articles were eligible for review, respectively. Cancer treatment had highly variable effects on taste perception during treatment and into survivorship. Learned food aversions were experienced by children receiving chemotherapy treatment and liking of meats and salty foods by children with cancer was affected. The impact of treatment on appetite varied. CONCLUSIONS: Cancer treatment did not uniformly affect taste perception. Food liking may be negatively affected, and learned food aversions may develop during cancer treatment. To establish the clinical relevance of childhood cancer treatment on taste perception and food hedonics, more research is required. SYSTEMATIC REVIEW REGISTRATION: PROSPERO registration no.CRD42020207127.

Meaningful consumer involvement in cancer care: a systematic review on co-design methods and processes.

OBJECTIVE: Although the benefits of consumer involvement in research and health care initiatives are known, there is a need to optimize this for all people with cancer. This systematic review aimed to synthesize and evaluate the application of co-design in the oncology literature and develop recommendations to guide the application of optimal co-design processes and reporting in oncology research, practice, and policy. METHODS: A systematic review of co-design studies in adults with cancer was conducted, searching MEDLINE, CINAHL, Embase, and PsycINFO databases and included studies focused on 2 concepts, co-design and oncology. RESULTS: A total of 5652 titles and abstracts were screened, resulting in 66 eligible publications reporting on 51 unique studies. Four frameworks were applied to describe the co-design initiatives. Most co-design initiatives were designed for use in an outpatient setting (n = 38; 74%) and were predominantly digital resources (n = 14; 27%) or apps (n = 12; 23%). Most studies (n = 25; 49%) used a co-production approach to consumer engagement. Although some studies presented strong co-design methodology, most (n = 36; 70%) did not report the co-design approach, and 14% used no framework. Reporting was poor for the participant level of involvement, the frequency, and time commitment of co-design sessions. Consumer participation level was predominantly collaborate (n = 25; 49%). CONCLUSIONS: There are opportunities to improve the application of co-design in oncology research. This review has generated recommendations to guide 1) methodology and frameworks, 2) recruitment and engagement of co-design participants, and 3) evaluation of the co-design process. These recommendations can help drive appropriate, meaningful, and equitable co-design, leading to better cancer research and care.

Using a public hospital funding model to strengthen a case for improved nutritional care in a cancer setting.

OBJECTIVE: This study aimed to measure the prevalence of malnutrition risk and assessed malnutrition in patients admitted to a cancer-specific public hospital, and to model the potential hospital funding opportunity associated with implementing routine malnutrition screening. METHODS: A point-prevalence audit of malnutrition risk and diagnosable malnutrition was conducted. A retrospective audit of hospital funding associated with documented cases of malnutrition was conducted. Audit results were used to estimate annual malnutrition prevalence, associated casemix-based reimbursement potential and the clinical support resources required to adequately identify and treat malnutrition. RESULTS: Sixty-four percent of inpatients were at risk of malnutrition. Of these, 90% were assessed as malnourished. Twelve percent of malnourished patients produced a positive change in the diagnosis-related group (DRG) and increased allocated financial reimbursement. Identifying and diagnosing all cases of malnutrition could contribute an additional AU$413644 reimbursement funding annually. CONCLUSIONS: Early identification of malnutrition may expedite appropriate nutritional management and improve patient outcomes in addition to contributing to casemix-based reimbursement funding for health services. A successful business case for additional clinical resources to improve nutritional care was aided by demonstrating the link between malnutrition screening, hospital reimbursements and improved nutritional care. What is known about the topic? It is known that between 20 and 50% of hospital patients are malnourished and oncology patients are 1.7 times more likely to be malnourished than are other hospitalised patients. Despite the existence of practice guidelines for malnutrition screening of at-risk oncology patients, these are not routinely implemented. Identification of malnutrition in hospitalised patients is linked to casemix funding via DRG. Casemix reimbursement for malnutrition can be enhanced if: (1) malnutrition risk is identified; (2) malnutrition is diagnosed; (3) the word 'malnutrition' and an associated action plan is documented in the medical record; and (4) malnutrition is recognised and recorded by the clinical coder. Amendments to the ICD-10-AM in 2008 allowing malnutrition to be recognised as a complication for coding when it is documented by a dietitian in the medical history has hospital reimbursement implications for dietetic practice. Reimbursement potential for malnutrition has been calculated in public hospitals in Australia with varying results. What does this paper add? This paper reports the components of a successful business case made to enhance resources for identification and treatment of malnutrition on the basis of improved treatment as well as enhanced reimbursement potential resulting from changes to the ICD-10-AM. The present study adds to the body of literature showing that malnutrition coding contributes to casemix funding in Australian public hospitals, as well as internationally, and highlights the previously unreported opportunity for a cancer-specific health service. This work demonstrated that reassignment of a DRG based on a diagnosis of malnutrition altered the overall casemix funding value for 12% of audited patients. This compares with the findings of other authors who demonstrated hypothetical DRG changes and financial reallocation. What are the implications for practitioners? This paper highlights that practitioner-centred strategies are needed to enhance malnutrition identification, diagnosis, documentation and coding to maximise casemix reimbursement and better treat malnutrition in hospitals. Strategies include education of the dietetics, medical and health-information workforce. This manuscript provides a description of the conduct of quality-improvement activities that may support successful business cases for increased dietetic resources in future.

Experiences and consequences of altered taste, flavour and food hedonics during chemotherapy treatment.

PURPOSE: Self-reported taste alterations are common in people receiving chemotherapy; however, it is usually unclear whether these reports refer to changes to the sense of taste itself or to problems related to the broader phenomenon of flavour, or the hedonic experience of eating and drinking. The purpose of this study was to explore patient and carer descriptions, experiences and consequences of taste and flavour changes associated with oxaliplatin treatment. METHODS: This study utilised a grounded theory research design. Purposeful sampling was used to recruit eligible patients who had self-reported taste changes in relation to oxaliplatin-containing chemotherapy for colorectal cancer. Content analysis of interview data was performed using an analysis framework derived from previous sensory and nutritional sciences and supportive care research. RESULTS: Ten patients and four carers participated in semi-structured interviews. The overarching theme identified from the data was reduced food enjoyment. In addition to changes to taste, participants described sensory and hedonic changes which influence overall flavour perception and food enjoyment. Reduced food enjoyment had dietary, social and emotional consequences for patients and carers. CONCLUSIONS: 'Taste' problems during oxaliplatin treatment mostly relate to the broader phenomena of flavour. This study has helped to unravel the major sensory determinants of the eating and drinking experience in the chemotherapy setting and has provided guidance regarding relevant and measurable endpoints of chemotherapy-related flavour changes. There remains a gap in knowledge between the pattern of flavour changes associated with chemotherapy treatment and how this influences dietary intake and nutritional status.

Development of Key Principles and Best Practices for Co-Design in Health with First Nations Australians.

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.

A Comprehensive Review of Optimal Approaches to Co-Design in Health 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.