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INTRODUCTION: Prep-4-RT is a co-designed stepped-care multimodal prehabilitation program for people scheduled to receive radiotherapy for head and neck cancer (HNC). Prehabilitation, which occurs between diagnosis and treatment commencement, aims to improve a patient's health to reduce the incidence and severity of current and future impairments. HNC treatment can be distressing and has detrimental impacts on function and quality of life. HNC patients have increased social vulnerabilities including higher rates of socio-economic disadvantage and engagement in lifestyle habits which increase cancer risk. High levels of physical and psychological impacts of HNC treatment and increased social vulnerabilities of this population warrant investigation of optimal pathways of care, such as prehabilitation. This paper describes a research protocol to evaluate the feasibility of Prep-4-RT, which was designed to prepare HNC patients for the physical and psychological impacts of radiotherapy. METHODS AND ANALYSIS: At least sixty adult HNC patients, scheduled to receive radiotherapy (with or without chemotherapy), will be recruited over a five-month period. All participants will receive access to Prep-4-RT self-management resources. Participants identified through screening as high-risk will also be offered individualised interventions with relevant allied health professionals prior to the commencement of radiotherapy (psychologists, dietitians, speech pathologists and physiotherapists). Participants will complete evaluation surveys assessing their experiences with Prep-4-RT resources and interventions. Clinicians will also complete program evaluation surveys. Primary feasibility outcomes include adoption (uptake and intention to try) and fidelity (adherence to the specialist prehabilitation pathway). Secondary feasibility outcomes include acceptability (patient and clinician) of and satisfaction (patient) with Prep-4-RT as well as operational costs. Feasibility outcome data wil

Introduction Patient experience (Pt Exp) is an important cancer survivorship outcome measure. This study aimed to understand Pt Exp of follow up (FU) care and determine whether sociodemographic and clinical characteristics impact Pt Exp Methods A 2018 cross-sectional survey of cancer pts treated in Victorian public hospitals. Follow-up care Exp responses were recoded to more or less positive experiences, and a composite index of FU care was computed. Chi-square tests examined associations between FU Exp and Pt characteristics. Multivariate regression explored associations between treatment care Exp and the composite index of FU care. Results 4998 of 10,662 (47%) surveys were returned; 3771 respondents were receiving FU care. Females, pts aged <50, those recently diagnosed or with less common cancers (ovarian, kidney, thyroid) were associated with less positive FU care Exp. Less positive FU Exp were reported by 1244 / 3169 (39%) pts regarding (re) being provided a written care plan, 1234 / 3037 (41%) re which new symptoms need investigation, 1259 / 3072 (41%) re how people feel after finishing treatment, and 1154 / 3081 (37%) re how to get extra support if needed. Exp of communication and coordination during the treatment phase were independent predictors of FU care Exp. Conclusions Many survivors report poor Exp of FU care. Exp of care during treatment impacts FU Exp. Focus on improvements earlier may enhance equitable care Exp.

Introduction Although Australians have access to universal healthcare they may experience (Exp) out of pocket costs. This study aimed to assess incurred costs, information and financial support, and understand associations with less positive Exp. Methods A 2018 online and paper-based cross-sectional survey of Victorian cancer patients (pts). Exp with financial aspects of care from diagnosis to followup were assessed via 9 items. Responses were recoded to more or less positive Exp. Chi-square tests examined associations between Exp of care and pt characteristics. Results 4998 / 10662 (47%) surveys were returned; 4342 had received treatment. 1210 / 4190 (29%) reported less positive Exp with costs; more frequently (freq) in females, aged <70, with (w) lower SES, receiving chemotherapy and recently diagnosed. 715 / 1683 (42%) had less positive Exp regarding being informed about costs associated w treatment; more freq aged <70, higher SES, receiving chemotherapy, non-English speaking and w more common cancers. 919 / 4157 (22%) reported less positive Exp w being offered financial support; more freq w females, aged <70, higher SES, those receiving chemotherapy, w poorer general health, recently diagnosed, metropolitan areas and w less common cancers. Conclusions Significant numbers of pts report out of pocket costs, inadequate information and lack of financial support. Pts need more preparatory information and support.

INTRODUCTION: The supportive care needs of men with prostate cancer (PCa) have been well documented, but little is known about how an online portal may address these. This study sought to determine priority issues facing men with PCa, barriers and enablers to accessing care and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool. METHODS: We conducted four online focus groups with HPs recruited from healthcare services in Victoria, followed by seven online codesign workshops with men with PCa, recruited through the Victorian Prostate Cancer Outcomes Registry, Prostate Cancer Foundation Australia and the Cancer Council Victoria. Men were eligible to participate if they had lived experience of PCa and access to the internet. We analysed focus groups thematically. Workshops were analysed using descriptive-content analysis. RESULTS: HPs (n = 39) highlighted that men had shifting priorities over time, but noted the importance of providing information to men in lay terms to assist in treatment decision-making and side-effect management. HPs identified key enablers to men accessing support services such as practice nurses, partners and having men share their stories with each other. HPs raised financial, cultural, geographic and emotional barriers to accessing supportive care. Inclusion of a PRO comparator tool received mixed support from HPs, with 41% (n = 16) supportive, 49% (n = 19) unsure and 10% (n = 4) not supportive. Men involved in workshops (n = 28) identified informational needs to assist in treatment decision-making and side-effect management as the top priority throughout care. Men described support groups and practice nurses as key enablers. Short consultation times and complex information were described as barriers. Unlike HPs, all men supported the inclusion of a PRO comparator tool in a portal. CONCLUSIONS: Our findings suggest that a patient support portal should provide information in

Introduction Although international large-scale studies have investigated routes to diagnosis for colorectal cancer, there is limited information on how New Zealanders seek help for bowel symptoms across different pre-diagnostic routes. Aim To better understand pre-diagnostic routes for colorectal cancer, including the characteristics of patients and key events associated with each route. Methods This study was a retrospective audit of hospital administrative and medical records for 120 patients with a confirmed diagnosis of colorectal cancer between 2016 and 2017. All patients were receiving care at one of two hospitals in central New Zealand; one urban and one rural. Extracted data were used to: categorise pre-diagnostic routes for colorectal cancer; describe the characteristics of people who presented by each route; and compare key events in the diagnostic and treatment intervals for people who presented by each route. Results Six routes to the diagnosis of colorectal cancer were identified. The three main routes included: routine general practitioner (GP) referral (28%, 95% CI: 21-37%), emergency presentation (27%, 95% CI: 20-35%), and other outpatient services (26%, 95% CI: 19-34%). Patients diagnosed by routine GP referral had the longest time to diagnosis, impacting on timeliness of treatment. Discussion This study has generated detailed insights about pre-diagnostic routes for colorectal cancer in New Zealand and shown consistency with findings from previously published international research. The granular findings can now inform areas for person- and system-level interventions that, in turn, could be tested in future studies to minimise emergency department and late presentations for colorectal cancer treatment in New Zealand.

Head and neck squamous cell carcinoma (HNSCC) is the most common cancer involving the mucosal surfaces of the head and neck and is associated with a number of etiological factors, including cigarette smoking, alcohol and betel nut consumption and exposure to high-risk human papillomavirus. The risk of HNSCC increases with age, peaking in the seventh and eighth decade, but this varies by anatomical and histological subtype. While several advancements have been made in the treatment of head and neck cancer (HNC) in recent decades, undertaking curative treatment still subjects the majority of HNSCC patients to substantial treatment-related toxicity requiring patients to tolerate a gamut of physical, psychological, and emotional demands on their reserves. In conjunction with other patient-related factors, clinicians involved in treating patients with HNSCC may incorporate advancing chronological age into their decision-making process when determining treatment recommendations. While advancing chronological age may be associated with increased concerns regarding physical treatment tolerability, clinicians may also be concerned about heightened vulnerability in various health and wellbeing outcomes. The available literature, however, does not provide evidence of this vulnerability in patients with advancing age, and, in many instances, older patients self-report greater resilience compared to their younger counterparts. While this data is reassuring it is limited by selection bias and heterogeneity in trial and study design and the absence of a consistent definition of the elderly patient with HNSCC. This narrative review article also includes a review of the measures used to assess HRQL, psychosocial outcomes and unmet needs in elderly or older patients with HNSCC.

Improving cancer outcomes for Indigenous people by providing culturally safe, patient-centred care is a critical challenge for health services worldwide. This article explores how three Australian cancer services perform when compared to two national best practice guidelines: the National Aboriginal and Torres Strait Islander Cancer Framework (Cancer Framework) and the National Safety and Quality Health Service (NSQHS) User Guide for Aboriginal and Torres Strait Islander Health (User Guide). The services were identified through a nationwide project undertaken to identify cancer services providing treatment to Indigenous cancer patients. A small number of services which were identified as particularly focused on providing culturally safe cancer care participated in case studies. Interviews were conducted with 35 hospital staff (Indigenous and non-Indigenous) and 8 Indigenous people affected by cancer from the three services. The interviews were analysed and scored using a traffic light system according to the seven priorities of the Cancer Framework and the six actions of the NSQHS User Guide. While two services performed well against the User Guide, all three struggled with the upstream elements of the Cancer Framework, suggesting that the treatment-focused Optimal Care Pathway for Aboriginal and Torres Strait Islander People with Cancer (Cancer Pathway) may be a more appropriate framework for tertiary services. This article highlights the importance of a whole-of-organisation approach when addressing and embedding the six actions of the User Guide. Health services which have successfully implemented the User Guide are in a stronger position to implement the Cancer Framework and Cancer Pathway.

PURPOSE: Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This qualitative sub-study was undertaken as part of a larger prospective longitudinal study in which recruitment and retention were very high. The aim was to gain an understanding of participants reasons for ongoing participation, at a time of heightened stress related to a new diagnosis of aggressive lymphoma and the rapid commencement of treatment. METHODS: This qualitative descriptive sub-study included semi-structured interviews with twenty-seven participants. Interviews were recorded and transcribed, and a thematic descriptive approach was used to analyse the data. RESULTS: Twenty-seven interviews were completed. Four themes described participants' motivation to consent and continue with the study. These included ease of participation, personal values, self-help and valued additional support. Participants understood the requirements of the study, and data collection occurring during hospital visits was perceived to be convenient. Interviewees confirmed that the study fulfilled desire to "help others". Although testing was intense and challenging, it provided feedback on current functioning and was described by some as a "welcome distraction" and enjoyable. Finally, interaction with the study nurse was perceived as an additional beneficial oversight and support. CONCLUSION: Achieving sustained participation in a prospective study with patients undergoing treatment is facilitated where the logistical demands of data collection are minimised; a clinician from the service is included; the tasks are seen as inherently interesting; and care is taken to provide empathic support throughout. TRIAL REGISTRATION: Australian New Zealand Clinical Trials Registry ACTRN12619001649101.

PURPOSE: Endometrial cancer is associated with the highest comorbid disease burden of any cancer. The aim of this trial was to assess the feasibility and safety of an allied health intervention during adjuvant treatment. METHODS: A mixed-methods pilot randomized (2:1) controlled trial with concealed allocation and assessor-blinding. Eligibility criteria: adjuvant endometrial cancer treatment scheduled, disease stage I-IIIC1, ECOG 0-2 and able to perform unsupervised physical activity (PA). Participants received usual care and 8 sessions of weekly, individualized, lifestyle education (diet and PA) with behavior change and social support (intervention group), delivered predominantly by telehealth, or usual care alone. Feasibility outcomes: recruitment and consent rates, decline reasons, program acceptability, intervention adherence and retention. RESULTS: 22/44 eligible patients (50%, 95%CI: 36%, 64%) were recruited over 10 months (14 intervention, 8 usual care). The recruitment rate was 2.2 patients/month (95%CI: 1.4, 3.3). Patients who declined had too much going on (7/22, 32%) or were not interested (6/22, 27%). Mean (SD) age and BMI were 63.2 years (6.8) and 31.9 kg/m2 (6.7). A majority were FIGO stage I (15/22, 68%) and received vaginal brachytherapy (14/22, 64%). Adherence was high, 11/14 (79%, 95%CI: 52%, 92%) participants attended >70% of scheduled sessions. Retention was 100% (95%CI: 85%, 100%) at 9 weeks, however completion of objective measures was impacted by COVID-19 restrictions. Telehealth and online questionnaires enabled participation. No serious adverse events occurred. CONCLUSION: The intervention was acceptable to participants with high levels of adherence and retention. Trial findings will be used to design a future RCT. TRIAL REGISTRATION: The trial was registered on www.anzctr.org.au (ACTRN12619000631101) 29/04/2019.

BACKGROUND: Oncology patients who are migrants or refugees face worse outcomes due to language and communication barriers impacting care. Interventions such as consultation audio-recordings and question prompt lists may prove beneficial in mediating communication challenges. However, designing robust research inclusive of patients who do not speak English is challenging. This study therefore aimed to: a) pilot test and assess the appropriateness of the proposed research design and methods for engaging migrant populations, and b) determine whether a multi-site RCT efficacy assessment of the communication intervention utilising these methods is feasible. METHODS: This study is a mixed-methods parallel-group, randomised controlled feasibility pilot trial. Feasibility outcomes comprised assessment of: i) screening and recruitment processes, ii) design and procedures, and iii) research time and costing. The communication intervention comprised audio-recordings of a key medical consultation with an interpreter, and question prompt lists and cancer information translated into Arabic, Greek, Traditional, and Simplified Chinese. RESULTS: Assessment of feasibility parameters revealed that despite barriers, methods utilised in this study supported the inclusion of migrant oncology patients in research. A future multi-site RCT efficacy assessment of the INFORM communication intervention using these methods is feasible if recommendations to strengthen screening and recruitment are adopted. Importantly, hiring of bilingual research assistants, and engagement with community and consumer advocates is essential. Early involvement of clinical and interpreting staff as key stakeholders is likewise recommended. CONCLUSION: Results from this feasibility RCT help us better understand and overcome the challenges and misconceptions about including migrant patients in clinical research.

PURPOSE: Cancer-related cognitive impairment (CRCI) is a recognised adverse consequence of cancer and its treatment. This study assessed the feasibility of collecting longitudinal data on cognition in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent via self-report, neuropsychological assessment, peripheral markers of inflammation, and neuroimaging. An exploration and description of patterns of cancer-related cognitive impairment over the course of treatment and recovery was also undertaken and will be reported separately. METHODS: Eligible participants completed repeated measures of cognition including self-report and neuropsychological assessment, and correlates of cognition including blood cell-based inflammatory markers, and neuroimaging at three pre-specified timepoints, time 1 (T1) - pre-treatment (treatment naïve), time 2 (T2) - mid-treatment, and time 3 (T3) - 6 to 8 weeks post-completion of treatment. RESULTS: 30/33 eligible patients (91%, 95% CI: 76%, 97%) were recruited over 10 months. The recruitment rate was 3 patients/month (95% CI: 2.0, 4.3 patients/month). Reasons for declining included feeling overwhelmed and rapid treatment commencement. Mean age was 57 years (SD = 17 years) and 16/30 (53%) were male. Most patients (20/30, 67%) had diffuse large B cell lymphoma or Hodgkin lymphoma (4/30, 13%). The neuroimaging sub-study was optional, 11/30 participants (37%) were eligible to take part, and all agreed. The remaining 19 participants were ineligible as their diagnostic PET/CT scan was completed prior. Retention and compliance with all assessments were 89 to 100% at all timepoints. Only one participant was withdrawn due to disease progression. CONCLUSIONS: Findings from this study including excellent recruitment, retention, and compliance rates demonstrate it is feasible to longitudinally assess cognition in people with newly diagnosed aggressive lymphoma during their initial treatment and recovery to

Cross-sectional studies report that up to 25% of people with gastroenteropancreatic neuroendocrine tumours (GEP NET) are malnourished. However, the changes in nutritional status and dietary intake over time are unknown. The present study aimed to comprehensively describe the impact of a GEP NET on nutritional status and quality of life (QOL). Patients diagnosed with a GEP NET were recruited to this prospective longitudinal study on initial attendance to the NET Unit at two tertiary hospitals in Melbourne (VIC, Australia). Patient self-reported QOL measures (European Organisation for Research and Treatment Cancer QLC-C30 and QLC-GINET21) and nutritional outcomes (nutritional status, weight change, fat-free mass [FFM], dietary change, dietitian contact) were collected bi-monthly for six months. Sixty-one patients were recruited (66% male) with a mean ± SD age of 62 ± 12 years, predominantly diagnosed with small intestinal NET and Grade 1/2 disease. Commonly reported symptoms were fatigue (79%), abdominal discomfort (75%) and pain (68%). More patients were malnourished at baseline than at 6 months (29% vs. 13%). Over this 6 months, 48% lost weight, 20% lost ≥ 5% of their body weight, and 62% lost FFM with an average FFM loss of 2.8 kg (95% confidence interval = 2.0, 3.6), consistent with altered body composition. Dietary change was reported by 56% at baseline and 53% at six months, but only 21% consulted a dietitian at baseline and 18% at 6 months. Clinically significant loss of weight and FFM affected many patients with a GEP NET; however, few patients were referred to/or received a consultation with a dietitian. Valid screening practices are needed to identify weight loss and nutrition issues in GEP NET patients, and to facilitate referral to dietitian services.

OBJECTIVE: To better serve women with gynaecological cancers, we need a sound understanding of their health, wellbeing and needs. This study sought to explore these issues in a sample of Australian women before commencing curative radiotherapy. METHODS: We undertook a secondary analysis of baseline data from a supportive care trial (n = 311). Descriptive statistics were used to summarise responses to measures of wellbeing, general psychological distress, symptom distress, sexual function and vaginal changes, and supportive care needs. Pre-specified regression models were used to examine sources of variation in wellbeing and sexual function. RESULTS: Women reported lower emotional, functional and physical wellbeing than population norms (all p < 0.001). The prevalence of general psychological distress was 31% (95% CI 26-36%). Distress caused by physical symptoms was typically low. Health system and information needs comprised eight of the top ten moderate-to-high supportive care needs. Most women reported no change in interest for physical contact or sex compared to pre-diagnosis, but some sexually active women (16-24%) reported smaller vaginal size, increased dryness, and more pain on intercourse. General psychological distress was a robust marker of poorer wellbeing and sexual function. CONCLUSIONS: Before radiotherapy, a substantial minority of women with gynaecological cancers experience general psychological distress, reduced wellbeing and moderate-to-high health system and information needs. A model of comprehensive care incorporating assessment of unmet needs, general psychological distress, and sexual issues is recommended. Healthcare providers may require training to elicit and respond to a constellation of interrelated issues and access relevant services for women requiring additional support.

BACKGROUND: Unmanaged consequences of cancer and its treatment are high among patients with lung cancer and their informal carers, resulting in avoidable healthcare use and financial burden. Provision of cancer supportive care addressing the impacts of cancer and its treatment has demonstrated efficacy in mitigating these consequences; however, globally, there is a lack of investment in these services. Paucity of robust economic evidence regarding benefit of cancer supportive care has limited policy impact and allocation of resources. This study therefore utilised a Social Return on Investment (SROI) methodology to conduct a forecast evaluation of lung cancer supportive care services, to ascertain potential social value and return on investment. METHODS: An SROI economic evaluation model was developed using qualitative stakeholder consultations synthesised with published evidence to develop the inputs, outcomes and financial value associated with the delivery of a hypothetical model of quality lung cancer supportive care services over a one and five year period. SROI ratios were generated to determine the social value and cost savings associated per every $1AUD invested in cancer supportive care for both the healthcare system and patients. Deadweight, drop off and attribution were calculated, and sensitivity analysis was performed to confirm the stability of the model. RESULTS: The value generated from modelled supportive care service investments in a one-year period resulted in an SROI ratio of 1:9; that is, for every dollar invested in supportive care, AUD$9.00 social return is obtained when savings to the healthcare system and benefits to the patients are combined. At five-years, these same investments resulted in greater cumulative value generated for both the patient and the healthcare system, with a SROI ratio of 1:11. CONCLUSION: Our study provides strong evidence for policy makers, clinicians and consumers to advocate for further investment in cancer support

OBJECTIVE: Knowledge of factors associated with intervention non-adherence may provide insights into the clinical utility of non-pharmacologic interventions. METHODS: This study compared complete and incomplete adherers to two separate components of a novel intervention package for women undergoing curative intent radiotherapy for gynaecological cancer on socio-demographic, clinical and pre-radiotherapy patient-reported outcomes data. RESULTS: Adherence to the tailored specialist nurse consultations was satisfactory (71% participated in all available sessions, 19% participated in all but one). Adherence to the telephone peer support sessions was less satisfactory (47% participated in all available sessions, 24% participated in all but one session). Complete adherers to the peer sessions reported significantly lower levels of psychological distress and significantly higher levels of physical, emotional and functional wellbeing before radiotherapy. No other statistically significant differences were observed between complete and incomplete adherers to the nurse- or peer-led sessions. CONCLUSION: Women's ability or motivation to engage with peer support may be influenced by their health and psychological status. Further, the extent of intervention non-adherence to the peer-led component may have compromised the assessment of its efficacy. PRACTICE IMPLICATIONS: Peer support may be less acceptable or appropriate for women with more complex care needs. Such women may prefer specialised care from trained professionals.

Abstract Background Active surveillance (AS) is the disease management option of choice for low-risk prostate cancer. Despite this, men with low-risk prostate cancer (LRPC) find management decisions distressing and confusing. We developed Navigate, an online decision aid to help men and their partners make management decisions consistent with their values. The aims are to evaluate the impact of Navigate on uptake of AS; decision-making preparedness; decisional conflict, regret and satisfaction; quality of illness communication; and prostate cancer-specific quality of life and anxiety. In addition, the healthcare cost impact, cost-effectiveness and patterns of use of Navigate will be assessed. This paper describes the study protocol. Methods Three hundred four men and their partners are randomly assigned one-to-one to Navigate or to the control arm. Randomisation is electronically generated and stratified by site. Navigate is an online decision aid that presents up-to-date, unbiased information on LRPC tailored to Australian men and their partners including each management option and potential side-effects, and an interactive values clarification exercise. Participants in the control arm will be directed to the website of Australia’s peak national body for prostate cancer. Eligible patients will be men within 3 months of being diagnosed with LRPC, aged 18 years or older, and who are yet to make a treatment decision, who are deemed eligible for AS by their treating clinician and who have Internet access and sufficient English to participate. The primary outcome is self-reported uptake of AS as the first-line management option. Secondary outcomes include self-reported preparedness for decision-making; decisional con

An amendment to this paper has been published and can be accessed via the original article.

INTRODUCTION: The purpose of this study was to describe the nature and impact of dysphagia and dysphonia in patients with limited-stage small-cell lung cancer (SCLC) before and after chemoradiation. METHODS: A prospective cohort study was conducted on patients receiving chemoradiotherapy for limited-stage SCLC. Patients received either 40, 45 or 50 Gy, commencing the second cycle of chemotherapy. Outcomes included: videofluoroscopy (VFSS) to investigate aspiration, swallowing function and oesophageal motility; oral intake limitations; patient-reported dysphagia; and patient-reported dysphonia. Data were collected before treatment and one, three and six months post-treatment. RESULTS: Twelve patients were enrolled. Oropharyngeal swallowing was safe and functional at all times. Three patients exhibited oesophageal motility disorders before treatment, and a further three post-treatment. Oral intake was most compromised one month post-treatment with five patients either tube dependent or eating very limited diets. At all other times patients were eating normal or near-normal diets. Despite normal oropharyngeal swallowing on VFSS, three patients reported moderate or severe dysphagia one month post-treatment. Three additional patients reported moderate or severe difficulties three and six months post-treatment. Patients who reported dysphagia one month post-treatment all received a mean and maximum oesophageal dose of ≥15.7 Gy and ≥42 Gy, respectively. Dose-response relationships were not apparent three and six months post-treatment. Voice problems varied, with worst scores reported one month post-treatment. CONCLUSIONS: This study identified discordance between observed swallowing function and patient-reported problems, which has clinical implications for patient management, and highlights future research needs. Ongoing efforts to reduce mucosal toxicity in patients with lung cancer are essential.

Following publication of the original article [1], we were notified of a typo in the spelling of the 10th author name, originally spelt as “Cavdon” instead of “Cavedon” (i.e., missing “e”). The original article has been corrected.