Women with gynaecological cancer awaiting radiotherapy: Self-reported wellbeing, general psychological distress, symptom distress, sexual function, and supportive care needs.

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.

Exploring health professional knowledge and management of nutritional complications in neuroendocrine cancer patients: Results of an international multidisciplinary survey.

BACKGROUND AND AIMS: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

ENhAncing Lifestyle Behaviors in EndometriaL CancEr (ENABLE): A Pilot Randomized Controlled Trial.

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.

Putting Policy into Practice: How Three Cancer Services Perform against Indigenous Health and Cancer Frameworks.

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.

Development of a hospital-based patient-reported outcome framework for lung cancer patients: a study protocol.

BACKGROUND: Patient-reported outcome (PRO) data is central to the delivery of quality health care. Establishing sustainable, reliable and cost-efficient methods for routine collection and integration of PRO data into health information systems is challenging. This protocol paper describes the design and structure of a study to develop and pilot test a PRO framework to systematically and longitudinally collect PRO data from a cohort of lung cancer patients at a comprehensive cancer centre in Australia. METHODS: Best-practice guidelines for developing registries aimed at collecting PROs informed the development of this PRO framework. Framework components included: achieving consensus on determining the purpose of the framework, the PRO measures to be included, the data collection time points and collection methods (electronic and paper), establishing processes to safeguard the quality of the data collected and to link the PRO framework to an existing hospital-based lung cancer clinical registry. Lung cancer patients will be invited to give feedback on the PRO measures (PROMs) chosen and the data collection time points and methods. Implementation of the framework will be piloted for 12 months. Then a mixed-methods approach used to explore patient and multidisciplinary perspectives on the feasibility of implementing the framework and linking it to the lung cancer clinical registry, its clinical utility, perceptions of data collection burden, and preliminary assessment of resource costs to integrate, implement and sustain the PRO framework. The PRO data set will include: a quality of life questionnaire (EORTC-QLQ-C30) and the EORTC lung cancer specific module (QLQC-LC-13). These will be collected pre-treatment (baseline), 2, 6 and 12 months post-baseline. Also, four social isolation questions (PROMIS) will be collected at baseline. DISCUSSION: Identifying and deciding on the overall purpose, clinical utility of data and which PROs to collect from patients requires careful consideration. Our study will explore how PRO data collection processes that link to a clinical data set can be developed and integrated; how PRO systems that are easy for patients to complete and professionals to use in practice can be achieved, and will provide indicative costs of developing and integrating a longitudinal PRO framework into routine hospital data collection systems. TRIAL REGISTRATION: This study is not a clinical trial and is therefore not registered in any trial registry. However, it has received human research ethics approval (LNR/16/PMCC/45).

A prospective cohort study of the effects of adjuvant breast cancer chemotherapy on taste function, food liking, appetite and associated nutritional outcomes.

BACKGROUND: 'Taste' changes are commonly reported during chemotherapy. It is unclear to what extent this relates to actual changes in taste function or to changes in appetite and food liking and how these changes affect dietary intake and nutritional status. PATIENTS AND METHODS: This prospective, repeated measures cohort study recruited participants from three oncology clinics. Women (n = 52) prescribed adjuvant chemotherapy underwent standardised testing of taste perception, appetite and food liking at six time points to measure change from baseline. Associations between taste and hedonic changes and nutritional outcomes were examined. RESULTS: Taste function was significantly reduced early in chemotherapy cycles (p<0.05) but showed recovery by late in the cycle. Ability to correctly identify salty, sour and umami tastants was reduced. Liking of sweet food decreased early and mid-cycle (p<0.01) but not late cycle. Liking of savory food was not significantly affected. Appetite decreased early in the cycle (p<0.001). Reduced taste function was associated with lowest kilojoule intake (r = 0.31; p = 0.008) as was appetite loss with reduced kilojoule (r = 0.34; p = 0.002) and protein intake (r = 0.36; p = 0.001) early in the third chemotherapy cycle. Decreased appetite early in the third and final chemotherapy cycles was associated with a decline in BMI (p = <0.0005) over the study period. Resolution of taste function, food liking and appetite was observed 8 weeks after chemotherapy completion. There was no association between taste change and dry mouth, oral mucositis or nausea. CONCLUSION: The results reveal, for the first time, the cyclical yet transient effects of adjuvant chemotherapy on taste function and the link between taste and hedonic changes, dietary intake and nutritional outcomes. The results should be used to inform reliable pre-chemotherapy education.