Search

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.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.Women reported lower emotional, functional and physical wellbeing than population norms (all p0.001). 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.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.

The Charlson Comorbidity Index (CCI) is a highly cited and well established tool for measuring comorbidity in clinical research, but there are problems with its use in practice. Like most comorbidity summary measures, the CCI was developed to adjust for prognostic comorbidities in statistical models, particularly those exploring associations between a risk of death or survival time and other patient-related and disease-related factors. Despite this, the CCI is often used in cancer research to measure all comorbidity, or as a multimorbidity measure, and CCI scores are often used to assess the prognostic importance of multiple health conditions. In the latter case, it is not at all surprising that researchers report a significant association between CCI scores and a risk of death or survival times because CCI scores provide a summary of the presence or absence of a set of prognostic comorbidities. Advances in multimorbidity research require specific attention to the methods used to develop relevant indices. Published literature on the association between the comorbidity and risk of death or survival time should be interpreted with caution, especially if the CCI was used to provide a measure of comorbidities.

Patients with neuroendocrine tumours (NET) are at nutritional risk due to symptoms and treatment side-effects. Current evidence-based guidelines lack information regarding optimal nutritional management. This study aimed to describe health professional knowledge and management of nutrition complications in GEP NET patients and summarise current international practice.Multidisciplinary health professionals who regularly provide care for NET patients, were invited to participate in a 21-item online survey. Survey questions asked about symptom prevalence, nutrition screening, assessment practices, and vitamin deficiency screening and supplementation practices. General demographic information was recorded.In total 73 health professionals completed the survey. Many worked in Australia (52%) and the United Kingdom (19%). Most responses were provided by medical oncologists (25%), nurses (23%) and dietitians (30%). Diarrhoea and fatigue were reported as the most common symptoms (86% and 60%, respectively) and of greatest concern to patients with NET (80% and 52%, respectively). Provision of advice for symptom management, weight loss and food intolerances was reported by 92%, 59% and 41%, respectively. Overall, 38% carried out screening/assessment for malnutrition and screening for vitamin deficiencies, respectively. Health professionals reported on the lack of NET-specific nutrition guidelines and hence used general oncology nutrition guidelines to direct their practice.This is the first international survey of nutrition knowledge and practices among NET health professionals. Results highlight variations in nutrition screening and assessment practices and identify a gap in NET-specific guidelines addressing nutrition issues in this at-risk patient group.

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.

Colorectal cancer (CRC) is commonly treated with surgery and its success is frequently defined by cure rates. Impact on other aspects of health and wellbeing are less frequently considered in clinical practice. Patient-reported outcome measures (PROMs) provide a useful means of assessing such impacts. This study examines changes in health-related quality of life (HRQoL) after surgical resection using PROMs.A prospective, longitudinal study was undertaken in 49 adults receiving curative surgery for CRC. Participants completed the Functional Assessment of Cancer Therapy-Colorectal (FACT-C) before surgery, and at 2 to 4 weeks, 3 and 6 months post-surgery. Linear mixed models were used to analyse FACT-C wellbeing and subscale scores.Patients reported a clinically important deterioration in functional and physical wellbeing 2 to 4 weeks post-surgery (both P 0.05); differences at 6 months after surgery were trivial. Conversely, patients reported clinically important improvement in emotional wellbeing at 2 to 4 weeks post-surgery; this improvement was sustained at 3 and 6 months post-surgery (all P 0.05). For social wellbeing and colorectal cancer-specific concerns, changes from before surgery at follow-up assessments were not statistically significant (all P 0.05).While physical aspects of HRQoL are affected in the short term by CRC surgery, clinically significant improvement in emotional wellbeing are reported early (2 to 4 weeks post-surgery). Future research may help identify patients who are at greater risk of surgical impacts on health and wellbeing.

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.

BACKGROUND The past decade saw remarkable advances in cancer care, treatment and outcomes, but the benefits were not experienced equally by all. Disparities are largely driven by social determinants of health and associated structural barriers. Specialist cancer nurses can ameliorate inequity of opportunity for optimal care, treatment and outcomes through timely screening, assessment and intervention. We designed a nursing complexity checklist (the Checklist) to support these activities, with the ultimate goal of reducing disparities in opportunity of access for people diagnosed with cancer. The aim of this study is to understand the clinical utility of the Checklist including issues affecting adoption into routine practice. OBJECTIVE Primary objectives are to assess the appropriateness, acceptability, and practicability of the Checklist from the perspective of cancer patients and specialist nurses; core aspects of each dimension were selected from Smart’s multi-dimensional model of clinical utility. Secondary objectives focus on two aspects of the practicability dimension including a preliminary investigation of the predictive value of the Checklist and concordance between specific checklist items and patient-reported outcome measures (PROMs). METHODS Up to sixty newly diagnosed cancer patients and ten specialist nurses will be recruited from a specialist cancer centre into this prospective mixed-methods case series study. The Checklist will be completed by a specialist nurse with patient participants. Within two weeks of Checklist completion, patients will complete five PROMs with established psychometric properties that correspond to specific checklist items and an individual semi-structured interview to explore its acceptability. Interviews with specialist nurses will occur 12 and 24 weeks after they first complete a checklist to explore multiple aspects of clinical utility including barriers and facilitators to effective implementation. Data regarding planned and unplanned patient service-use will be collected from patient follow-up interviews at 12 weeks and the electronic medical record (EMR) at 24 weeks after Checklist completion. Descriptive statistics will be used to summarise operational, checklist and EMR data. Contingency tables and conditional probabilities will be used to explore the predictive value of the Checklist. Descriptive statistics, Cohen’s d/U3 and plots will be used to explore the relationship between specific checklist items and relevant PROMs. Qualitative data will be analysed using a content analysis approach. RESULTS This study was approved by the institution’s ethics committee. The enrolment period commenced May 2022 and ended November 2022. Thirty-seven cancer patients and seven specialist cancer nurses were recruited in this time. Data collection is scheduled for completion at the end of May 2023. CONCLUSIONS This prospective mixed-methods case series study will evaluate the clinical utility of a nursing complexity checklist. It will also provide preliminary evidence on its predictive value and information to support its seamless implementation into everyday practice including, but not limited to, possible revisions to the Checklist, instructions and training for relevant personnel.

Objective Healthcare experiences, quality of life and psychosocial needs of patients with Neuroendocrine tumours (NETs) will be assessed to identify differences between NET sub-groups and inform the design of supportive care services. Methods This study constitutes phase one of a three-phase mixed-methods multi-site study with NET patients (n = 123). Demographic, clinical and patient reported outcome questionnaire data was collected. Results No differences in patient reported outcomes were found beyond symptoms of diarrhoea and flushing between NET sub-groups. For combined NET patients, the majority reported negative experiences in their understanding of the explanation of what was wrong with them (67%); receiving written information about their cancer (69%), their family/carer receiving all the information required to care for them (61%); and the usefulness of information about NETs online (66%). NET patients reported at least one moderate-to-high need for disease specific information (63%). Medium- to large-sized differences in quality of life subscales were also observed with the functioning group reporting more anxiety compared to population norms. Conclusions There is a need to improve the current provision of information for people with NETs. Practice implications These findings will inform the design and development of an informational resource to facilitate improved understanding for patients with NETs.

Purpose To examine sexual health, including sexual satisfaction, and perceived changes in relationships and sexual relationships of human papillomavirus (HPV) oropharyngeal cancer (OPC) survivors ≥12 months after (chemo)radiation therapy. Methods and Materials We undertook a cross-sectional study of HPV-OPC survivors who had completed treatment ≥12 months prior. Eligible patients completed the EORTC QLQ-SHQ22, a customized relationship questionnaire, the EORTC QLQ-C30, MDASI-HN, and PROMIS Anxiety and Depression scales. Results We enrolled 136 survivors (median age, 61 years [range, 42-87 years]; male, 84%; currently partnered, 72%). The median time from (chemo)radiation therapy completion was 2.8 years (range, 1.0-5.5 years). Most patients (71/131; 60%) reported an active sex life as important; however, only 20% (26/133) reported significant recent sexual activity (“quite a bit”/“very much”). The mean sexual satisfaction score was 47/100 (interquartile range, 27-67; standard deviation 28). On univariable analysis, greater sexual satisfaction was positively associated with greater importance of sexual activity, stronger libido, greater relationship security, and more erection confidence (males). Lower sexual satisfaction was significantly associated with female sex (P = .04), more medical comorbidities (P = .008), and more time since treatment completion (P = .006). Only a few patients reported a change in their marital status (10/136; 7%). The majority (62/109; 57%) of patients partnered at diagnosis reported no change in their precancer relationship. Among those reporting a change, it was more frequently perceived as positive (29/109; 27%) than negative (16/109; 15%). Regarding their sexual relationship, 54 of 107 (50%) reported no change, 40 of 107 (37%) reported a negative change, and 8 of 107 (7%) reported a positive change. Conclusions Although an active sex life is important to many HPV-OPC survivors, fewer reported significant recent sexual activity. Sexual satisfaction scores were moderate in this cohort. Although recall bias was possible, most patients reported either no change or a positive change in their interpersonal relationship. Prospective studies evaluating sexual health outcomes and addressing informational needs in HPV-OPC survivors are needed.

To describe changes in health-related quality of life (QoL) from before colorectal cancer (CRC) surgery to 1 and 3-month post-surgery in patients diagnosed pre-operatively as sarcopenic or non-sarcopenic by computed tomography (CT) analysis. Secondary analysis of a prospective observational cohort study with one pre-operative and two post-operative assessments. Patient-reported outcome measures (PROMs) were collected at each timepoint using Functional Assessment of Cancer Therapy–Colorectal and the EuroQol-5D (EQ-5D) questionnaires. Pre-operative staging CT scans of the third lumbar vertebra (axial slice) were analysed using Slice-O-Matic Software to determine if patients had CT defined sarcopenia by employing sex-specific threshold values for skeletal muscle index. Patient-reported outcome measure scores were compared with minimal clinical important difference estimates to determine if changes were clinically significant. Twenty-five of 40 patients were found to be sarcopenic. The difference between sarcopenic groups on the EQ-5D was medium-sized and clinically significant, with the sarcopenic group reporting lower health status. The non-sarcopenic group displayed a clinically significant reduction in physical wellbeing post-operatively. The sarcopenic group did not demonstrate a clinically important reduction in physical wellbeing. For functional wellbeing, the sarcopenic group recorded a clinically significant reduction at the 1-month timepoint, trending back towards baseline by the 3-month timepoint. The non-sarcopenic group recorded almost no change in functional scores. This study explored the novel concept of the effect of sarcopenia on QoL in the CRC surgical setting. Clinically significant changes were identified at both post-operative timepoints. This highlights an important proof of concept that PROMs can detect meaningful clinical change in CRC patients in the context of sarcopenia and should be further explored.

Objective Cancer supportive care comprises an integrative field of multidisciplinary services necessary for people affected by cancer to manage the impact of their disease and treatment and achieve optimal health outcomes. The concept of supportive care, largely driven by Margaret Fitch’s seminal supportive care framework, was developed with the intent to provide health service planners with a conceptual platform to plan and deliver services. However, over time, this concept has been eroded, impacting implementation and practice of supportive care. This study therefore aimed to examine expert contemporary views of supportive care with the view to refocusing the definition and conceptual framework of cancer supportive care to enhance relevance to present-day cancer care. Methods A two-round online modified reactive Delphi survey was employed to achieve consensus regarding terminology to develop a contemporary conceptual framework. A listing of relevant cancer supportive care terms identified through a scoping review were presented for assessment by experts. Terms that achieved ≥ 75% expert agreement as ‘necessary’ were then assessed using Theory of Change (ToC) to develop consensus statements and a conceptual framework. Results A total of 55 experts in cancer control with experience in developing, advising on, delivering, or receiving supportive care in cancer took part in the Delphi surveys. Expert consensus assessed current terminology via Delphi round 1, with 124 terms deemed relevant and ‘necessary’ per pre-specified criteria. ToC was applied to consensus terms to develop three key statements of definition, and a comprehensive conceptual framework, which were presented for expert consensus review in Delphi round 2. Conclusion Finalised definitions and conceptual framework are strongly aligned with relevant international policy and advocacy documents, and strengthen focus on early identification, timely intervention, multidisciplinary collaboration, and end-to-end, cross-sector, cancer supportive care.

Objective Radiotherapy for gynaecological cancer is associated with multiple adverse effects. This randomised controlled trial evaluated the impact of a combined nurse- and peer-led psycho-educational intervention on psychological distress, preparation for treatment, quality of life, psychosexual function, unmet needs and vaginal stenosis. Methods Eligible women had a confirmed diagnosis of gynaecological cancer, scheduled to receive radiotherapy with curative intent, aged ≥18 years, and able to read and write English. Participants randomly assigned one-to-one to either four nurse-led consultations plus four peer-led telephone sessions, or to usual care. Participants completed study measures at baseline, immediately before first radiotherapy (FU1), and four weeks (FU2), three (FU3), six (FU4), and 12 months (FU5) post radiotherapy. The primary outcomes were psychological distress at FU1 and FU2 measured by the Hospital Anxiety and Depression Scale. Results Of 840 eligible participants, 625 were approached and 319 (51%) consented; 158 assigned to intervention, 160 to usual care with 1 withdrawing before randomisation. Between-groups differences for primary outcomes were trivial- and small-sized, (both p > 0.05). Notable effects on secondary outcomes favouring the intervention at FU2 included preparation for treatment (sensory/psychological concerns, d = 0.57; and procedural concerns, d = 0.52) and specific needs domains (sexuality needs, d = 0.38; and health system and information needs, d = 0.41). Conclusions There was no evidence that a nurse- and peer-led intervention had a beneficial effect on psychological distress compared to usual care. However, improved treatment readiness and lower health system and sexuality needs indicate the intervention may have addressed outcomes known to be important to this population.

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 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 inform the development of future research to improve patient experiences and cognitive outcomes. Trial registration. Australian New Zealand Clinical Trials Registry ACTRN12619001649101.

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.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.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.Results from this feasibility RCT help us better understand and overcome the challenges and misconceptions about including migrant patients in clinical research.

BACKGROUND 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. OBJECTIVE To determine priority issues facing men with PCa, barriers and enablers to accessing care, format and organisation of information on a portal and whether health professionals (HPs) and men would support the inclusion of a patient-reported outcome (PRO) comparator tool within the portal. METHODS A qualitative action research study was conducted. Data collection comprised four online focus groups with HPs recruited from four healthcare services in Victoria (3 metropolitan, 1 regional) and seven online co-design workshops with men with PCa, recruited through the Prostate Cancer Outcomes Registry – Victoria, Prostate Cancer Foundation Australia, and the Cancer Council Victoria. We invited men’s support persons to one workshop. Men were eligible to participate if they had lived experience of PCa and access to the internet. Focus groups were analysed 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 and in a variety of formats 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 compactor 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) ranged from 55 to 82 years of age. One workshop included five female support persons. Men identified informational needs to assist in treatment decision-making and side effect management as the top priority throughout care. Similar to HPs, support groups and practice nurses were described 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 into a portal. Men reported a preference for video and audio stories to deliver portal content. CONCLUSIONS Our findings suggest that a patient support portal should provide information in lay terms that address the shifting priorities of men with PCa. While slight variations in the perspectives of HPs and men with PCa concerning the barriers and enablers to accessing care exist, these can be addressed in a portal. Men with PCa already use online support resources and would welcome the development of a portal to centralise support information and a PRO comparator tool to prompt health-seeking behaviour. Future research should implement these findings in the development of a portal, and pilot and evaluate the portal within a population-based sample.

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, transcribed and a thematic descriptive approach 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 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.

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.

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.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.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.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.Australian New Zealand Clinical Trials Registry ACTRN12619001649101.

Highlights • Unilateral radiotherapy is utilised in T1-2, N0-N1 lateralised tonsillar tumours. • The role of unilateral radiotherapy in more advanced nodal disease is less clear. • Higher symptom burden and lower QoL was reported by patients treated with bilateral radiotherapy. • In the IMRT era, bilateral treatment for tonsillar cancer may have an enduring impact on the patient. • Prospective evaluation of unilateral radiotherapy with lateralised tumours and N2-3 is needed., Purpose The purpose of this study was to compare self-reported health-related quality of life (QoL) and symptom burden in early stage tonsillar carcinoma patients treated with unilateral (URT) and bilateral radiotherapy (BRT). Methods and materials This is a secondary analysis of a larger study assessing patient reported outcomes in human papillomavirus (HPV) oropharyngeal cancer (OPC) patients. Recruited patients were ≥12 months from completion of radiotherapy. This analysis included only patients with T1-2, N1-2b tonsil cancer and excluded patients with base of tongue involvement or recurrent disease. QoL and patient reported toxicity was measured using the EORTC QLQ-C30 module and the MDASI-HN. Results Patients were enrolled from November 2018 to May 2019. Of the 136 patients recruited to the main study, 43 were eligible for this substudy (22 URT, 21 BRT), with a median age and follow up of 58.2 and 3.0 years respectively. The two groups were balanced with respect to patient, tumor and treatment factors with the exception of higher rates of T2 disease (27% v 71%, p = 0.006) and more extensive GTV nodal volumes (11.0 v 25.5cc, p = 0.006) in the BRT group. BRT patients had lower global health status/QoL (84 v 69, p = 0.0005) and social functioning scores (93 vs 78, p = 0.033) on the EORTC QLQ-C30, and higher symptom severity (0.6 vs. 2.0, p = 0.001) and symptom interference scores (0.8 vs. 2.0, p = 0.010) on the MDASI-HN. Four of the six largest differences observed on MDASI-HN items were attributable to radiotherapy technique (dry mouth, mucous, difficulty swallowing/chewing and taste), with corresponding dose differences to the respective organs (contralateral parotid, oral cavity and pharyngeal constrictors). In every instance, severity of symptoms was worse on average for patients treated with BRT. Conclusions In the highly conformal radiotherapy era, BRT in early HPV tonsillar cancer survivors has an enduring impact on long-term QoL and toxicity.

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 conflict, regret and satisfaction; quality of illness communication; and prostate cancer-specific quality of life. Uptake of AS 1 month after consent will be determined through patient self-report. Men and their partners will complete study outcome measures before randomisation and 1, 3 and 6 months after study consent. Discussion The Navigate online decision aid has the potential to increase the choice of AS in LRPC, avoiding or delaying unnecessary radical treatments and associated side effects. In addition, Navigate is likely to reduce patients’ and partners’ confusion and distress in management decision-making and increase their quality of life. Trial registration Australian and New Zealand Clinical Trial Registry ACTRN12616001665426. Registered on 2 December 2016. All items from the WHO Trial Registration Data set can be found in this manuscript.

Purpose: To describe the nature and impact of dysphagia (difficulty swallowing) and dysphonia (impaired voice) 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 40Gy in 15 fractions, 45Gy in 30 fractions (delivered BD) or 50Gy in 25 fractions, commencing the second cycle of carboplatin/etoposide or cisplatin/etoposide chemotherapy. Outcomes included: videofluoroscopy swallowing studies (VFSS) to investigate aspiration, swallowing function, and oesophageal motility disorders; limitations to oral intake; patient-reported swallowing problems; and patient-reported voice problems. Data were collected before treatment and at one, three and six months post-treatment.Results: Twelve patients were enrolled. The oropharyngeal swallow was safe and functional at all time points. Three patients exhibited oesophageal motility disorders before treatment, while a further three exhibited disorders post-treatment. Oral intake was most compromised one month post-treatment with five patients being either tube dependent or eating only very limited diets. At all other times patients were eating a normal or near-normal diet. Despite normal oropharyngeal swallowing on VFSS, three patients reported moderate or severe swallowing difficulties one month post-treatment. Three additional patients reported moderate or severe difficulties three and six months post-treatment. Patients who reported swallowing difficulties one month post-treatment had all received a mean and maximum radiation dose to the oesophagus of ≥15.7Gy and ≥42Gy respectively. Dose-response relationships were no longer apparent three and six-months post treatment. Voice problems were variable, with the worst scores reported one month post-treatment.Conclusions: Although patient numbers are small, this study identified discordance between observed swallowing function and patient-reported problems, which has clinical implications for the management of patients with SCLC, as well as identifying areas for future research. Ongoing efforts to reduce mucosal toxicity in lung cancer patients are essential.

IntroductionCancer-related cognitive impairment (CRCI) is a distressing and disabling side-effect of cancer treatments affecting up to 75% of patients. For some patients, their cognitive impairment may be transient, but for a subgroup, these symptoms can be long-standing and have a major impact on the quality of life. This paper describes the protocol for a study: (1) to assess the feasibility of collecting longitudinal data on cognition via self-report, neuropsychological testing, peripheral markers of inflammation and neuroimaging and (2) to explore and describe patterns of cancer-related cognitive impairment over the course of treatment and recovery in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent.Methods and analysisThis is a prospective, longitudinal, feasibility study in which 30 newly diagnosed, treatment-naive patients with aggressive lymphoma will be recruited over a 12-month period. Patients will complete comprehensive assessments at three time points: baseline (time 1, pre-treatment) and two post-baseline follow-up assessments (time 2, mid-treatment and time 3, 6–8 weeks post-treatment completion). All patients will be assessed for self-reported cognitive difficulties and objective cognitive function using Stroop Colour and Word, Trail Making Test Part A and B, Hopkins Verbal Learning Test-Revised, Controlled Oral Word Association and Digit Span. Blood cell-based inflammatory markers and neuroimaging including a positron emission tomography (PET) with 18F-labelled fluoro-2-deoxyglucose (18F-FDG) and CT (18F-FDG-PET/CT) and a MRI will explore potential inflammatory and neuroanatomical or functional mechanisms and biomarkers related to CRCI. The primary intent of analysis will be to assess the feasibility of collecting longitudinal data on cognition using subjective reports and objective tasks from patients during treatment and recovery for lymphoma. These data will inform the design of a larger-scale investigation into the patterns of cognitive change over the course of treatment and recovery, adding to an underexplored area of cancer survivorship research.Ethics and disseminationEthical approval has been granted by Austin Health Human Rights Ethics Committee (HREC) in Victoria Australia. Peer reviewed publications and conference presentations will report the findings of this novel study.Trial registration numberAustralian New Zealand Clinical Trials Registry (ACTRN12619001649101).