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Understanding the psychological wellbeing of people with cancer is a key component of assessment and intervention in quality cancer care. However, the unique experiences of rural cancer populations are less often explored than those from urban centres. The aim of this study was to perform a meta-analysis of Australian studies that compared the psychological wellbeing experiences of people with cancer from rural and urban locations. Five databases were searched, and 19 studies, involving 16,947 participants, assessing and comparing the psychological wellbeing of rural and urban populations with cancer were included. The analysis indicated that Australian rural cancer populations have greater odds of worse psychological wellbeing than those from urban areas (OR = 1.54, 95% CI [1.01, 2.35], p = 0.044). This disparity remains when cancer types are analysed separately, with a slightly smaller odds ratio for rural people with breast cancer (OR = 1.29, 95%CI [1.01, 1.64], p = 0.046) and a slightly larger odds ratio when cancers excluding breast cancer were reviewed (OR = 1.78, 95% CI [1.59, 2.01], p = <.001). Significant heterogeneity was found. Despite increasing emphasis in Australia on psychological wellbeing throughout the cancer journey, there remain significant disparities whereby rural people experience greater impacts upon their psychological wellbeing. The wellbeing of Australian rural populations with cancer remains an area in which clinical and political focus is imperative. Whilst screening is a necessary first step, additional clinical implications for improving rural access to appropriately skilled health professionals who provide oncology-specific assessment and intervention are suggested. What is already known: Cancer is a major public health issue, and its psychosocial impacts are substantial, not just on patients but on their families and the broader community. The prevalence of clinically significant psychological distress is higher amongst people with cancer than the general population. However, identification, treatment, and provision of psychological support is inconsistent across services and geographical areas, and notably lacking in rural areas. Disparities in screening, assessment and intervention for psychological wellbeing in people with cancer remain, despite the fact that systematic application of screening, appropriate referral, and intervention can improve quality of life and reduce healthcare costs associated with inpatient and outpatient cancer care. What this paper adds: This article extends outcomes from previous systematic reviews and analyses from Australia and internationally with the addition of meta-analytic methods. It was specifically designed to solely focus on Australian cancer populations. The results suggest that Australian rural populations with cancer may have anywhere from 30% to 70% greater odds of experiencing poorer psychological wellbeing than those from urban areas. This paper highlights ongoing disparities in rural psycho-oncology that may be impacting wellbeing outcomes from rural people in Australia, and urges psychologists, other health professionals, and policy-makers to proactively address these inequities with improved screening, assessment and intervention for their rural populations. [ABSTRACT FROM AUTHOR]

Objective: The aims of this study were to investigate trajectories of anxiety and depression symptoms among gynaecological cancer (GC) patients having curative-intent radiotherapy (RT) treatment and identify which patient characteristics predict anxiety and depression trajectories. Methods and measures: Latent profile analysis (LPA) was used to identify unique trajectories of anxiety and depression symptoms, spanning prior to the start of RT until 12-month post-RT, among 151 GC patients in the PeNTAGOn randomized control trial. Demographic and clinical characteristics were assessed at baseline, and anxiety and depression symptoms were assessed five times over 12 months. A bias-adjusted 3-step maximum likelihood approach was used to identify demographic and clinical predictors of trajectory profiles. Results: Four latent profiles each were identified for anxiety and depression trajectories. Most patients had minimal to mild levels of anxiety or depression that remained steady or declined over 12 months following treatment. A minority of patients were in profiles that exhibited clinically significant distress; either 'High fluctuating' anxiety or 'Mild-moderate fluctuating' depression. Anxiety and depression profiles were predicted by clinical and demographic factors, such as age, living arrangements, RT type, cancer stage, physical symptom distress and use of support services. Conclusions: Psychological care of patients in the higher distress trajectories is paramount and, importantly, they could be identified prior to treatment based on the factors identified. Review for at least a month post-RT is warranted. [ABSTRACT FROM AUTHOR]

Introduction: Our research group is conducting three large randomized placebo-controlled trials of medicinal cannabis for cancer symptoms. All participants are invited to take part in a posttrial surveillance study. Methods: Participants were given the manufacturers dosing instructions and liberty to titrate to effect. Data were collected on symptoms (Edmonton Symptom Assessment Scale [ESAS] score), perceived benefits, adverse effects, satisfaction with the product, and dose/frequency. Results: Twenty-six percent of eligible participants consented to take part in the surveillance study. Most participants changed their self-titrated dose at least once. Pain, sleep, and mood were the most frequently cited symptoms which improved. Fatigue, nausea, and cognitive impairment were the most frequently mentioned adverse effects. Conclusion: Participants felt confident making changes to their medicinal cannabis dose within the limits suggested by the manufacturer of each product. A number of benefits and adverse effects were ascribed to the product. Benefits were similar to those described in previous studies. [ABSTRACT FROM AUTHOR]

Aims: To investigate anxiety and depression after primary treatment for ovarian cancer in relation to diet quality and intake. Methods: In a cohort of women with ovarian cancer in Australia, levels of anxiety and depression (normal, subclinical, and clinical) were assessed using the Hospital Anxiety and Depression Scale at 9 months post‐diagnosis. Dietary intake was assessed using a validated food frequency questionnaire at 12 months post‐diagnosis and scored using the Healthy Eating Index 2015. Multinomial logistic regression and bivariate analyses were used to investigate relationships between levels of anxiety and depression and subsequent diet quality and intake of food groups. Results: Of 595 women, anxiety and depression were identified among 128 (21%) and 80 (13%) women, respectively. Compared to women without anxiety or depression, women with subclinical anxiety (odds ratio = 0.49, 95% confidence interval: 0.25–0.98) and those with clinical depression (odds ratio = 0.25, 95% confidence interval: 0.07–0.93) were less likely to score in the highest quartile for diet quality. Separate adjustment for age, education, employment, disease stage, body mass index, and smoking status did not attenuate these associations. In bivariate analyses, women with subclinical anxiety were more likely to report higher intakes of sweet foods. Those with clinical depression were more likely to report lower intakes of orange vegetables and wholegrains, higher intakes of sweetened beverages, and not consume alcohol or soya foods. Conclusions: Anxiety or depression after primary treatment for ovarian cancer may be associated with poorer diet quality. Efforts to improve diet quality post‐treatment should consider support for mental health. [ABSTRACT FROM AUTHOR]

A hospital‐wide point prevalence study investigated frailty and pain in patients with a cancer‐related admission. Modifiable factors associated with frailty in people with cancer were determined through logistic regression. Forty‐eight patients (19%) with cancer‐related admissions were 2.65 times more likely to be frail and 2.12 more likely to have moderate pain. Frailty and pain were highly prevalent among cancer‐related admissions, reinforcing the need for frailty screening and importance of pain assessment for patients with cancer. [ABSTRACT FROM AUTHOR]

As the culture of silence that once surrounded cancer has gradually given way to greater public awareness, normative visions of what cancer survivorship should entail have proliferated. These visions emphasise positivity and perseverance in pursuit of cure. While these visions provide comfort to many, for people with metastatic cancer, the emphasis on cure can undermine their sense of belonging to the broader collective of people living with cancer. Drawing on semi‐structured interviews with 38 Australian women living with metastatic breast cancer, we explore how incurable cancer inflects understandings of self and transforms interpersonal relationships. Extending ideas around biosociality and belonging, we explore the tenuousness of social bonds, revealing how (in)visibility, (in)authenticity and (in)validation circulate within the daily lives of women with metastatic breast cancer. We conceptualise accounts according to four social bonds: (1) threatened bonds where a relationship is strained by misunderstanding, (2) severed bonds where a relationship is ruptured due to misunderstanding, (3) attuned bonds whereby a relationship is based on shared identification and (4) flexible social bonds when a relationship is based on mutual understanding. More broadly, we illustrate the persistence of normative visions of cancer survivorship and their enduring effects on those whom such visions exclude. [ABSTRACT FROM AUTHOR]

Introduction: People living with advanced cancer want to continue participating in their valued occupations amid cancer progression. However, increasing dependence and bodily deterioration challenge a person's ability to do so, thus requiring adaptation to how they engage in their occupations. Theoretical frameworks on the process of occupational adaptation often do not address the implications of progressive functional decline. Methods: A longitudinal phenomenological design was used to understand the lived experience of occupational engagement for working‐aged adults living with advanced cancer. A semi‐structured interview series explored participants' experience of occupational engagement and how this changed over time. Data were analysed thematically and mapped against the Model of Human Occupation (MOHO). Findings: Eight adults (40–64 years old) participated in 33 interviews over 19 months. Three themes were constructed from the data: ongoing adaptation through doing, the significance of volition in adaptation, and everyday life is contingent on my environment. Study findings demonstrate that the process of adaptation occurs through occupational engagement, is motivated by volition, and is affected by the environment. Volition and the environment play a more central role in occupational adaptation than occupational competency for the advanced cancer cohort. Conclusion: Study findings further MOHO's theoretical conceptualisation of occupational adaptation by identifying the centrality of volition and the environment in the process of adaptation. For people living with advanced cancer, disease progression results in unremitting functional decline, thus rendering competency an unstable and untenable construct. Rather, this paper argues that occupational adaptation is facilitated by volition (i.e., the motivation behind the doing) and the environment, thus fostering a sense of identity and meaning at the end of life. Occupational therapists' awareness of the significance of volition and the environment can thus foster continued occupational engagement and meaning at the end of life for people living with advanced cancer. [ABSTRACT FROM AUTHOR]

Introduction: Prevalence of distress in cancer patients is established at approximately 50%, yet uptake of psychosocial support is minimal. Objective: This study aimed to understand why clinically distressed oncology patients choose not to access psychosocial support, including whether this differs by geographic location. It also aimed to determine the proportion of rural and metropolitan patients experiencing clinical levels of distress, and of these, the proportion who do not wish to access support. Design: The study used a cross‐sectional design. Two hundred and ninety‐eight Australian cancer patients completed an online survey, including the Distress Thermometer and open‐ended questions about reasons for declining support. Descriptive statistics and content analysis were used to analyse the data. Findings: More than half (56%) of participants reported experiencing clinically significant levels of distress. Of these, almost half (47%) declined psychosocial support. Content analysis of reasons for declining psychosocial support resulted in six main concepts: I don't need support; I'm using personal resources to cope; negative perceptions and attitudes; life doesn't stop for cancer; I'm focussed on fighting cancer; and systemic barriers. Rural cancer patients most often indicated using personal resources to cope, while metropolitan participants most commonly indicated not needing support. A range of subconcepts were also identified. Perceiving distress as manageable or transient was almost exclusively reported by metropolitan participants, while stigma was almost exclusively reported by rural participants. Discussion: The findings provided greater depth of insight into reasons cancer patients decline psychosocial support and identified several qualitative differences in the reasons provided by metropolitan and rural patients. Recommendations are provided for clinicians, in particular for clinicians who work with rural cancer patients and their supporters. Conclusion: These findings can inform equitable resourcing of psychosocial support in rural areas and the adaptation of psychosocial interventions to be more flexible and responsive to individual needs. This may help increase patient uptake of support, particularly in rural areas. [ABSTRACT FROM AUTHOR]

Purpose. To examine psychosocial and well-being concerns throughout the cancer experience, from prediagnosis to survivorship. Whilst most oncology research focuses on patients, the role and experiences of families and caregivers are increasingly recognised as a core component of health service delivery. Moreover, research suggests that geography is an important consideration, with evidence of rural inequities in health service provision and access. Aims. (i) To examine the unique patient and caregiver experiences of rural people in three rural cancer treatment centres in New South Wales (NSW) and (ii) to examine the barriers to rural patients and caregivers accessing psycho-oncological support in NSW. Methods. A convergent parallel mixed-method evaluation of the psychosocial experiences of rural patients and caregivers accessing cancer services through three health services in rural NSW was undertaken (N = 125). Measures of psychological distress as well as quantitative and qualitative barriers data were collected. Results. Approximately, one-third of the participants reported moderate to severe distress. Patients and caregivers reported systemic, intrapersonal, interpersonal, and pandemic-specific barriers in accessing quality psychosocial healthcare. Conclusions. These results suggest that cancer patients and caregivers in rural NSW may experience elevated levels of psychological distress and barriers in accessing psychosocial care. The combination of high psychological need for patients and caregivers with reduced availability of psychosocial support services has substantial implications for psychological wellbeing and service provision. Underdetection of psychosocial need and a lack of support services pose a significant challenge for rural people with cancer and for those who care for them; this must be an urgent priority for quality improvement and equitable healthcare provision. [ABSTRACT FROM AUTHOR]

The number of people diagnosed with cancer in Australia continues to rise, with more than 1 in 22 Australians now living with a history of cancer. This increase is occurring in parallel with a growing body of evidence about the psychological problems faced by patients with cancer, and the beneficial effects of interventions specifically designed to address these needs. Despite this evidence, research suggests that many psychologists feel underequipped for the unique issues encountered in cancer settings. In light of the profound effects of the COVID−19 pandemic on people living with cancer, it is timely to reflect on the complex needs related to cancer, with the aim of ensuring that psychologists are equipped to enhance the wellbeing of patients. In this commentary we provide an overview of: (a) the key issues that can arise across the cancer continuum, and (b) the existing evidence-based resources and tools for the screening and management of these presenting concerns. This commentary concludes with a discussion of the emotional impact for psychologists working with cancer patients, and consideration of how access to professional training in this area might be enhanced. What is already known about the topic: Cancer is highly prevalent and rates of distress associated with cancer are high. People with cancer have clear psychological needs, but psychologists often report feeling underequipped and lacking in confidence to work with this population. Equipping psychologists to address these issues could improve quality of life and clinical outcomes for cancer patients and reduce health-system burden. What this topic adds: We outline some of the most commonly experienced issues, as reported by people with cancer. We summarise the evidence-based interventions that address the unique issues faced by this population. We describe how psychologists can manage their own emotional wellbeing in working with people with cancer. [ABSTRACT FROM AUTHOR]

Introduction: Facilitators to implement shared cancer follow‐up care into clinical practice include mechanisms to allow the oncologist to continue overseeing the care of their patient, two‐way information sharing and clear follow‐up protocols for general practitioners (GPs). This paper aimed to evaluate patients, GPs and radiation oncologists (ROs) acceptance of a shared care intervention. Methods: Semi‐structured interviews were conducted pre‐ and post intervention with patients that were 3 years post radiotherapy treatment for breast, colorectal or prostate cancer, their RO, and their GP. Inductive and deductive thematical analysis was employed. Results: Thirty‐two participants were interviewed (19 patients, 9 GPs, and 4 ROs). Pre intervention, there was support for GPs to play a greater role in cancer follow‐up care, however, patients were concerned about the GPs cancer‐specific skills. Patients, GPs and ROs were concerned about increasing the GPs workload. Post intervention, participants were satisfied that the GPs had specific skills and that the impact on GP workload was comparable to writing a referral. However, GPs expressed concern about remuneration. GPs and ROs felt the model provided patient choice and were suitable for low‐risk, stable patients around 2–3 years post treatment. Patients emphasised that they trusted their RO to advise them on the most appropriate follow‐up model suited to their individual situation. The overall acceptance of shared care depended on successful health technology to connect the GP and RO. There were no differences in patient acceptance between rural, regional, and cancer types. ROs presented differences in acceptance for the different cancer types, with breast cancer strongly supported. Conclusion: Patients, GPs and ROs felt this shared cancer follow‐up model of care was acceptable, but only if the RO remained directly involved and the health technology worked. There is a need to review funding and advocate for health technology advances to support integration. Patient or Public Contribution: Patients treated with curative radiotherapy for breast, colorectal and prostate cancer, their RO and their GPs were actively involved in this study by giving their consent to be interviewed. [ABSTRACT FROM AUTHOR]

Objectives: To assess the influence of geographic remoteness on health care utilization at end of life (EOL) by people with advanced cancer in a geographically diverse Australian local health district, using two objective measures of rurality and travel-time estimations to health care facilities. Methods: This retrospective cohort study examined the association between rurality (using the Modified Monash Model) and travel-time estimation, and demographic and clinical factors, with the receipt of >1 inpatient and outpatient health service in the last year of life in multivariate models. The study cohort comprised of 3546 patients with cancer, aged ≥18 years, who died in a public hospital between 2015 and 2019. Results: Compared with decedents from metropolitan areas, decedents from some rural areas had higher rates of emergency department visits (small rural towns: aRR 1.29, 95% CI: 1.07–1.57) and ICU admissions (large rural towns: aRR 1.32, 95% CI: 1.03–1.69), but lower rates of acute hospital admissions (large rural towns: aRR 0.83, 95% CI: 0.76–0.90), inpatient palliative care (PC) (regional centers: aRR 0.85, 95% CI: 0.75–0.97), and inpatient radiotherapy (lowest in small rural towns: aRR 0.07, 95% CI: 0.03–0.18). Decedents from rural and regional centers had lower rates of outpatient chemotherapy and radiotherapy use, yet higher rates of outpatient cancer service utilization (p < 0.05). Shorter travel times (10–<30 minutes) were associated with higher rates of inpatient specialist PC (aRR 1.48, 95% CI: 1.09–1.98). Conclusions: Reporting on a series of inpatient and outpatient services used in the last year of life, measures of rurality and travel-time estimates can be useful tools to estimate geographic variation in EOL cancer care provision, with significant gaps uncovered in inpatient PC and outpatient service utilization in rural areas. Policies aimed at redistributing EOL resources in rural and regional communities to reduce travel times to health care facilities could help to reduce regional disparities and ensure equitable access to EOL care services. [ABSTRACT FROM AUTHOR]

Background: Advances in screening and treatments for colorectal cancer (CRC) have improved survival rates, leading to a large population of CRC survivors. Treatment for CRC can cause long-term side-effects and functioning impairments. General practitioners (GPs) have a role in meeting survivorship care needs of this group of survivors. We explored CRC survivors' experiences of managing the consequences of treatment in the community and their perspective on the GP's role in post-treatment care. Methods: This was a qualitative study using an interpretive descriptive approach. Adult participants no longer actively receiving treatment for CRC were asked about: side-effects post-treatment; experiences of GP-coordinated care; perceived care gaps; and perceived GP role in post-treatment care. Thematic analysis was used for data analysis. Results: A total of 19 interviews were conducted. Participants experienced side-effects that significantly impacted their lives; many they felt ill-prepared for. Disappointment and frustration was expressed with the healthcare system when expectations about preparation for post-treatment effects were not met. The GP was considered vital in survivorship care. Participants' unmet needs led to self-management, self-directed information seeking and sourcing referral options, leaving them feeling like their own care coordinator. Disparities in post-treatment care between metropolitan and rural participants were observed. Conclusion: There is a need for improved discharge preparation and information for GPs, and earlier recognition of concerns following CRC treatment to ensure timely management and access to services in the community, supported by system-level initiatives and appropriate interventions. Colorectal cancer survivors can experience ongoing side-effects and functioning impairments long after completing treatment. This study explored how colorectal cancer survivors manage their consequences of treatment in the community. Colorectal cancer survivors were interviewed about the side-effects they experienced after treatment; their experiences of general practitioner-coordinated care; perceived care gaps; and their perception of the general practitioner role in post-treatment survivorship care. [ABSTRACT FROM AUTHOR]

Background: In Australia, breast cancer is the most commonly diagnosed cancer in women, and improved survival rates have placed an increased burden on the healthcare system. To better utilise community pharmacists in anticancer therapy, a medicine management service for neratinib was initiated in an Australian community pharmacy for patients with breast cancer. Aim: To explore the experience and satisfaction of Australian breast cancer patients who received a pharmacist medicine management service for their neratinib treatment through a community pharmacy. Method: Patients enrolled in the neratinib special access program were invited to complete an electronic survey between February–September 2019. A mixed‐methods approach was utilised in data analysis. Ethics approval was granted by the University of Canberra Human Research Ethics Committee (Project No: 20181648). Results: Thirty‐three individuals completed the survey. A majority of participants (94%) were either 'very satisfied' or 'satisfied' with the time the pharmacist spent with them. As part of the service, 88% of participants viewed the first pharmacist session as 'absolutely' worthwhile and 79% believed that the pharmacist interaction increased their understanding of neratinib therapy. Many participants supported the continued provision and expansion of the service (88%). Conclusion: This pilot study provided valuable insights into participants' experiences of a pharmacist medicine management service for neratinib therapy. The unique preferences and health information needs of patients were highlighted. Further investigation is needed to explore how community pharmacists may be best utilised to improve breast cancer care and support patient needs. [ABSTRACT FROM AUTHOR]

Background: With increasing multidisciplinary care strategies, palliative medicine practitioner perceptions toward acupuncture integration are significant. Objective: To evaluate acupuncture availability and acceptability in Australian palliative care. Outcomes: (1) Domains of the survey included participant characteristics, (2) workplace availability, (3) personal attitudes, and (4) recommendation likelihood. Design: An online REDCap survey of Australian palliative medicine practitioners was administered. Results: Acupuncture was mostly not available/permitted at workplaces (45.2%) due to cost/funding (57.1%) and limited evidence (57.1%). When available by workplace (24.2%) or affiliated service (4.8%), doctors mostly administered acupuncture (66.7%). Respondents were not up to date with current research (71.4%). Referral likelihood increased with confidence in provider (80.0%), workplace availability (77.1%), and patient prior/current use (77.1%). Patient acupuncture discussions were rare (62.9%) with barriers of effectiveness uncertainty (71.4%) and limited knowledge of availability (57.1%). Conclusion: Despite available integrative services and acceptability by Australian palliative medicine practitioners, utilization is low. Further research into acupuncture effectiveness for palliative symptoms, feasibility, and patient acceptability is required. [ABSTRACT FROM AUTHOR]

Background: There is evidence linking diet to the risk of developing cancer and preventing recurrence, but the therapeutic value of food in treating cancer remains unclear. Therefore, guidelines for well‐nourished patients with cancer are based on general healthy eating recommendations. This study aims to describe patients' knowledge, attitudes, and beliefs towards the role of diet and cancer. Methods: A cross‐sectional survey was undertaken between July 2016 and January 2017. Patients being reviewed by Medical Oncology at a tertiary cancer service were invited to complete a questionnaire. Results: One hundred and nine patients participated, with 61% receiving curative treatment. Median body mass index was 26.9 kg/m2. A high frequency reported weight change (72%) and dietary modifications (reduction in overall intake; 62%). Patients were more likely to modify their diet if they had experienced weight change [odds ratio (OR): 3.59, 95% confidence interval (CI): 1.49–8.63], had malignancy‐related anorexia (OR: 2.38, 95% CI: 1.06–5.32), strongly believed that diet contributed to their cancer (OR: 9.09, 95% CI: 2.55–32.44) or felt that nutrition played an important role in treatment (OR: 4.50, 95% CI: 1.95–10.40). Dietary information was largely sought from their hospital dietitian (51%), the Internet (39%), or treating oncologist (35%), of whom 47% and 57% found the information from their hospital dietitian and oncologist helpful, respectively. Conclusions: Our survey confirms patients place great importance on diet as part of their cancer management. Evidence‐based dietetic services currently focus on managing malnutrition during treatment, but this study has identified hospital clinicians are not necessarily providing dietary information to meet patient expectations and thus a potential gap in patient‐centred nutrition services for this patient population. Key points: Patients view diet as an integral part of their cancer treatmentMany patients modified their diet during treatmentGaps exist between patient expectations of dietary information wanted versus received [ABSTRACT FROM AUTHOR]

PURPOSE Childhood cancer survivors report self-monitoring for and worrying about symptoms of disease recurrence and secondary cancers, although symptom-related worry is associated with poorer health-related quality of life. This survey captured pediatric oncologists’ beliefs and communication practices regarding symptom self-monitoring for childhood cancer survivors. METHODS Using a closed-loop snowball sampling technique, pediatric oncologists completed an online survey regarding the importance of symptom self-monitoring for off-therapy patients, the degree to which symptom self-monitoring was perceived to cause stress and worry, and communication practices. RESULTS 196 pediatric oncologists (White [78%]; female [64%]; Mage = 5 47 years) from every continent except Antarctica participated. Oncologists believed it is important for off-therapy patients to self-monitor for symptoms of cancer recurrence (90%) and treatment late effects (94%), although some noted that recurrence (30%) and late effects (55%) are typically detected by routine surveillance before symptoms appear. Oncologists varied in their beliefs that off-therapy patients do (31%) or do not (31%) worry unnecessarily about symptoms of recurrence. Two thirds (62%) of oncologists reported often/always discussing with off-therapy patients which symptoms could indicate cancer recurrence, whereas fewer than half (43%) often/always discussed which symptoms were unlikely to indicate recurrence. Oncologists identified a need for education regarding how to communicate around symptom self-monitoring and the potential utility of a screening tool to identify those who worry excessively. CONCLUSION Despite nearly universal belief that their off-therapy patients should self-monitor for symptoms of disease recurrence and late effects, a substantial proportion of pediatric oncologists do not counsel patients on symptom self-monitoring. Since nearly one-third believe that off-therapy patients worry unnecessarily about symptoms of recurrence, improving patient education regarding which symptoms are and are not medically concerning could decrease stress and improve health-related quality of life for pediatric cancer survivors. [ABSTRACT FROM AUTHOR]

Background Childhood cancer survivors are vulnerable to long-term treatment-related health conditions, which can lead to poor quality of life. Little data exist on the overall health of long-term Australian and New Zealand childhood cancer survivors or on survivors' motivations for attending survivorship clinics. Methods This study administers a cross-sectional questionnaire to long-term survivors ≥5 years from their primary diagnosis. We compared participant-reported number of late effects by a cancer diagnosis, and identified clinical (eg, treatment) and demographic (eg, age) factors that were associated with late effects burden and engagement in cancer survivorship care. Results A total of 634 participants completed questionnaires (48% male, mean age = 21.7 years). Most participants (79%) reported at least one cancer-related late effect, most commonly fatigue (40%) and memory/learning difficulties (34%). Brain tumor survivors reported a higher total number of late effects than survivors with other diagnoses (mean = 5.7 vs. 3.2, P  < .001). Participants' most commonly reported motivators for engaging in care were to understand problems that may occur later in life because of their cancer and/or treatment (98.5%) and to get reassurance about one's health (97.4%). The proportion of survivors endorsing each motivating factor was similar across cancer diagnoses, with the exception of learning more about insurance and pensions (highest in brain tumor survivors = 80%). In multivariable analyses, survivors were more likely to report being engaged in survivorship care if they were younger (P  < .001), less time had elapsed since their diagnosis (P  < .001), or they reported a higher number of motivating factors (P  = .016). Conclusion Survivors report a range of health problems decades after treatment completion. Understanding the burden of late effects, and motivators for seeking survivorship care to manage these health problems, is important for ensuring that tailored interventions or services are available to meet the needs of this growing population and to design effective models of survivorship care. [ABSTRACT FROM AUTHOR]

People with head and neck cancer (HNC) require ongoing speech-language pathology (SLP) services into the post-acute recovery phase of care. However, there are recognised service inequities/barriers for people from rural areas who are unable to access SLP services locally, necessitating travel to metropolitan centres. This study implemented strategies to assist rural speech-language pathologists to work to full scope of practice and support post-acute rehabilitation services for people with HNC. The study involved five SLP departments within a rural health referral network (one tertiary cancer centre, four rural sites). It involved a Plan-Do-Study-Act (PDSA) method, across two six month cycles, to achieve implementation of a model to support local SLP delivery of HNC care. Data collected included service activity, consumer feedback from people accessing local care, staff perceptions of the model and changes to local SLP service capabilities. Staff identified four objectives for change across the two PDSA cycles including resource development, upskilling/training and improving communication, and handover processes. In cycle 1, multiple resources were developed such as an eLearning program for training and skill development. In cycle 2, a pilot trial of a shared-care model was implemented, which successfully supported a transfer of care to local services for eight people with HNC. The majority of consumers accessing HNC care locally were satisfied with the service and would recommend future people with HNC receive similar care. The PDSA process supported development and implementation of a model enabling local speech-language pathologists to offer post-acute care for people with HNC. This model helps rural people with HNC to access care closer to home by supporting rural clinicians to work to full scope of practice. [ABSTRACT FROM AUTHOR]

Objective: This study aimed to investigate COVID-19 vaccine hesitancy, acceptance, and unmet informational needs in a cancer population during the first phase of the coronavirus disease 2019 (COVID-19) vaccination rollout in Australia. Methods: A cross-sectional survey was conducted in a large tertiary hospital in Queensland, Australia, between 10 May and 31 July 2021. The survey assessed health beliefs, experiences of the COVID-19 pandemic, COVID-19 vaccine hesitancy and informational needs. Results: COVID-19 was perceived to be a significant threat to both physical and mental health. While 57.9% (n = 110) of respondents believed the COVID-19 vaccines were safe and 64.2% (n = 122) believed they were effective, more than half (52.6%; n = 100) agreed that they worried about vaccine side effects. Most respondents (84.2%; n = 160) planned to receive the COVID-19 vaccine; however, feelings of hesitancy remained. There was a statistically significant association between those aged under 60 years (P = 0.003), those with previous vaccine hesitancy (P = 0.000), those who felt they had not received adequate information (P = 0.000) and vaccine hesitancy. Requested information pertained to interactions with cancer treatments, those with a history of blood clotting and information for those undergoing bone marrow transplantation. Conclusions: There is a need for tailored COVID-19 vaccine communication that is responsive to the concerns of people with cancer. This will be beneficial during current and future vaccination rollouts. What is known about topic? People with cancer are a COVID-19 vaccine priority group, as they are at increased risk of morbidity and mortality from this disease. There is currently a dearth of information regarding COVID-19 vaccine hesitancy, acceptance, or informational needs for this population. What does this paper add? This paper has shown that although vaccine refusal rates were low in this population, feelings of hesitancy remained. Women, those in younger age categories, those with previous vaccine hesitancy and those who felt they had not received adequate information had stronger vaccine hesitancy and higher refusal rates. What are the implications for practitioners? There is a need for tailored information and open communication regarding COVID-19 vaccines and people with cancer. There is an opportunity to build upon established relationships of trust between cancer patients and their clinicians. [ABSTRACT FROM AUTHOR]

Aims: To examine and refine a conceptual model of resilience in adult cancer care based on the perspectives and experiences of resilience in adults with colorectal cancer. Design: A descriptive qualitative study was performed. Methods: Twelve participants diagnosed with colorectal cancer that had completed cancer treatment with curative intent were recruited from a tertiary hospital in Australia from July to December 2019. The meaning of individual resilience was explored using in‐depth individual interviews. Data were analysed using inductive thematic analysis. Following data analysis, the elements of the conceptual model of resilience were mapped against the themes and subthemes to refine the model. Results: Five themes were identified as key elements of individual resilience in adults with colorectal cancer: (1) seeking motivations to move forward; (2) striving for normality; (3) adapting and managing self; (4) drawing on external supports; (5) redefining self. A refined conceptual model of individual resilience in adults with colorectal cancer was developed based on the integration of the themes and the elements of the conceptual model of individual resilience. Conclusions: Our refined conceptual model of individual resilience in adults with colorectal cancer could facilitate nurses' and other health professionals' understanding of the process of how resilient individuals with colorectal cancer overcome their illness‐related adversity. This refined model may be used to further develop and test cancer‐specific resilience measures and develop interventions to facilitate resilience in people living with colorectal cancer. Impact This research identified five features of resilience in adults with colorectal cancer and refined a conceptual model of resilience in adults with colorectal cancer. The findings could help nurses and other health professionals with identifying individuals who are at risk of adaptation difficulties and contribute to an early referral to psychosocial support services. [ABSTRACT FROM AUTHOR]

Introduction: Cancer incidence and survivorship are increasing worldwide. With more people living through and beyond cancer, there is a subsequent increase in their supportive care needs. This systematic review of qualitative studies aimed to describe the impacts of unmet supportive care needs on cancer survivors in Australia. Methods: Databases MEDLINE, EMBASE and Scopus were searched, and after screening and applying eligibility criteria, 27 qualitative studies were included. Findings were synthesised according to the Supportive Care Framework for Cancer Care, including informational, physical, practical, emotional, psychological, social and spiritual need domains. Results: The systematic review identified impacts of unmet informational, physical, practical, emotional and psychological needs. Frequently identified impacts of unmet informational needs were feelings of abandonment and isolation, distress, confusion and regret. Common impacts of unmet physical and practical needs were financial burden and return‐to‐work difficulties. Over half of all unmet supportive care needs caused emotional and psychological impacts. Conclusions: Findings identify the detrimental emotional and psychological impacts resulting from a range of unmet supportive care needs. The review highlights the interconnections between supportive care need domains thereby enhancing the understanding of the impacts of unmet SCNs. Findings may inform policy and practice change to improve supportive cancer care. [ABSTRACT FROM AUTHOR]

Objective: The objective of this study is to explore both the negative and positive lived experiences of cancer survivors during specialist inpatient rehabilitation programmes. Methods: This phenomenological study explored the negative and positive perspectives of cancer survivors with residual disability, during their inpatient rehabilitation. Semi‐structured interviews conducted with 22 inpatients on admission and discharge were analysed using the protocols of Interpretative Phenomenological Analysis. Results: Experiences of inpatient cancer rehabilitation were not independent of the whole cancer trajectory. Rather, for these inpatients, processing and ruminating upon challenges to self from the moment of cancer diagnosis and throughout treatments indicated that more emotional and psychosocial support may be useful throughout cancer rehabilitation and the whole cancer trajectory. Conclusion: Understanding the concurrent sources of psychological distress and growth in these cancer survivors as they recover from life changing events provides a unique consumer evaluation of an inpatient cancer rehabilitation service and the overall cancer experience. This study has implications for developing insight into the impact that the cancer trajectory has on the individual and reinforces the importance of a holistic approach to rehabilitation that includes a supported mind, body and spirit appreciation of healing. [ABSTRACT FROM AUTHOR]

Objective: Ovarian cancer (OC) can significantly change the way women feel about their body. However, personal accounts regarding these changes are lacking in the literature. Therefore, the aim of this study was to gain an understanding of the ways in which OC can affect relationships, sexuality, womanhood and body image. Methods: Ninety‐eight Australian women aged 18 and over diagnosed with OC completed an online survey that invited narrative responses to open‐ended questions about relationships, sexuality, body image and womanhood following OC treatment. Responses were analysed thematically while applying a sociocultural lens. Results: Three themes and two subthemes were identified: Failure and Loss of Femininity and Womanhood, Internalising Public Perception of Body and Illness and Altered Relationships which comprised two subthemes, Loss of the Sexual Self and Relationship Burden. These themes suggest women view themselves and their relationships in comparison with sociocultural understandings of body normalcy. Women often questioned their self‐worth, their relationships and place within society due to changes in fertility, sexuality and bodily functioning. Conclusion: These results highlight a need for health care professionals to open dialogue with women about sexuality and ensure information and support is given to reduce stigma and positively influence self‐perception and increase body acceptance. [ABSTRACT FROM AUTHOR]

Background The diagnosis and treatment of cancer can cause significant psychological and physical distress for patients and their families. Participation in culturally appropriate cancer support groups has been reported to improve the psychological effects of cancer, including the patient's ability to cope with the illness. In Australia, culturally and linguistically diverse (CALD) communities, including Arabic-speaking people, face numerous challenges accessing and engaging in mainstream health support services. Objective The purpose of this qualitative exploratory study was to describe the experiences of cancer patients, survivors, and their family members who participated in the activities of an Arabic cancer support group. Methods Semi-structured, individual face-to-face interviews were conducted in the Arabic language using an interview guide. All interview data were transcribed verbatim in Arabic and thematically analysed. Results Six participants agreed to participate in the interviews. Five key themes were identified -- (1) a sense of belonging; (2) maintaining mental wellbeing; (3) empowerment through knowledge; (4) challenges in attending the group; and (5) envisioning support for the future. Implications for practice Using culturally appropriate cancer support groups for Arab people affected by cancer is beneficial to improving their quality of life during the cancer journey. [ABSTRACT FROM AUTHOR]

Introduction Financial toxicity (FT) is increasingly recognised as a common distressing effect following a cancer diagnosis in Australia and globally. However, a validated, comprehensive tool for subjectively assessing FT suitable for the Australian healthcare system is lacking. Objectives The objectives of this project are to: (1) develop a comprehensive instrument for FT appropriate for the Australian setting, and (2) quantify the experiences of FT in people with cancer and the factors associated with these experiences. Methodology This study will be guided by the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) for patient-reported outcome measures development. Initial questionnaire items will be generated based on our recent systematic review and other reviews. Items will further be screened to determine content and internal validity based on expert consultation (n=6) and cancer survivors (n=15). Item response theory and classical test theory will be used to help reduce items. Retained items will form a pilot instrument that will be subjected to psychometric testing. A cognitive interview "think loud" method will be used for 20 participants in a pilot test to ensure question suitability and patient understanding. A cross-sectional survey of 600 cancer survivors recruited via the Princess Alexandra Hospital in Brisbane and nationally through social media will be used to establish reliability and validity of the new instrument. A cut-off score for the new instrument for predicting poor quality of life will be identified by receiver operating characteristic analysis. Outcomes According to the COSMIN guidelines, the final questionnaire will be developed by means of factor analysis, tested for reliability, internal consistency (Cronbach's α test and item-total correlation) and stability of measurements over time (test-retest reliability by intraclass correlation coefficient and weighted Cohen's kappa coefficient). Conclusion This project will provide the first comprehensive subjective FT instrument validated for the Australian setting. [ABSTRACT FROM AUTHOR]

Introduction An ovarian cancer diagnosis often results in a poor prognosis, with limited effective treatment options and high rates of recurrence. Understandably significant psychosocial distress is experienced. There are few ovarian cancer specific psychosocial models of care that are evidence based and accessible to all. Objectives 1. To describe a telehealth psychosocial support service for people affected by ovarian cancer in Australia. 2. To report on the experiences of psychosocial support among people affected by ovarian cancer. Methods The telehealth psychosocial support service (PSS) at Ovarian Cancer Australia (OCA) was established to address the absence of an ovarian cancer specialised support service in Australia. A PSS questionnaire was sent to those referred to the OCA PSS in 2023 (n=115). In total 49 people completed the questionnaire (42.6% response rate). Questions pertaining to perceived satisfaction and an adapted version of the Clinical Evaluation Questionnaire (CEQ- 2) were included. Results An ovarian specific counselling service was established and implemented. For those who completed the PSS questionnaire, the average age was 65.77 years, were mostly female (96%), resided in urban/metro areas (63%), and had no active disease (53%). Main reasons for accessing support were anxiety, low mood, fear of cancer recurrence and impact of ovarian cancer on relationships. Around 80-90% of people agreed that counselling increased their coping skills and helped them better understand their experience of ovarian cancer. Overall people reported to be satisfied with OCA counselling support and would recommend it to others impacted by ovarian cancer. Conclusions OCA has successfully built an ovarian cancer specific counselling service that is free and accessible to any Australian diagnosed with ovarian cancer and their family. Those accessing the PSS report benefits and would recommend the service to others. These results may assist other oncology services who seek to develop and implement a counselling service. [ABSTRACT FROM AUTHOR]

Background: Theory-based and qualitative evaluations in pilot trials of complex clinical interventions help to understand quantitative results, as well as inform the feasibility and design of subsequent effectiveness and implementation trials. Aim: To explore patient, family, clinician and volunteer ('stakeholder') perspectives of the feasibility and acceptability of a multicomponent non-pharmacological delirium prevention intervention for adult patients with advanced cancer in four Australian palliative care units that participated in a phase II trial, the 'PRESERVE pilot study'. Design: A trial-embedded qualitative study via semi-structured interviews and directed content analysis using Michie's Behaviour Change Wheel and the Theoretical Domains Framework. Setting/participants: Thirty-nine people involved in the trial: nurses (n = 17), physicians (n = 6), patients (n = 6), family caregivers (n = 4), physiotherapists (n = 3), a social worker, a pastoral care worker and a volunteer. Results: Participants' perspectives aligned with the 'capability', 'opportunity' and 'motivation' domains of the applied frameworks. Of seven themes, three were around the alignment of the delirium prevention intervention with palliative care (intervention was considered routine care; intervention aligned with the compassionate and collaborative culture of palliative care; and differing views of palliative care priorities influenced perspectives of the intervention) and four were about study processes more directly related to adherence to the intervention (shared knowledge increased engagement with the intervention; impact of the intervention checklist on attention, delivery and documentation of the delirium prevention strategies; clinical roles and responsibilities; and addressing environmental barriers to delirium prevention). Conclusion: This theory-informed qualitative study identified multiple influences on the delivery and documentation of a pilot multicomponent non-pharmacological delirium prevention intervention in four palliative care units. Findings inform future definitive studies of delirium prevention in palliative care. Australian New Zealand Clinical Trials Registry, ACTRN12617001070325; https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=373168 [ABSTRACT FROM AUTHOR]

A cancer diagnosis can have significant financial impacts for patients, often resulting from unexpected out‐of‐pocket expenses and a reduced capacity to work. These financial implications have been well characterised quantitatively in common cancers. However, less is known about the lived experience of financial stress, particularly outside the United States and in rarer cancers. This study aimed to explore the perceived financial impact of acute myeloid leukaemia (AML)—a rare haematological malignancy where patients may be particularly vulnerable to financial stress due to the lengthy, specialised and centralised care. The findings provide insight into the patients' lived experience of the personal financial impact of the disease. This Australian qualitative study was undertaken with 11 adults in remission from AML and recruited from their treating hospital. Semi‐structured interviews were transcribed, and data were managed using NVivo. Themes were identified through inductive and deductive analysis using open, axial and thematic coding. Four themes were identified: burden of AML‐attributable costs (e.g. out‐of‐pocket parking and medication expenses); accommodating the AML‐impact on paid work (e.g. early retirement and modifying job tasks); the consequence of financial strain from AML (e.g. using savings and accessing Government welfare) and concerns about the future and future familial financial burden (e.g. securing finances and worry about depleting financial resources). A reduction in or stopping work was perceived as the most burdensome to their current and future finances. The findings demonstrate people with AML experience financial difficulty even within a publically funded healthcare system. Opportunities exist for health services to alleviate some financial burden through reducing or abolishing parking fees for oncology patients and ensuring adequate access to social workers to facilitate access to Government welfare. Improving patients' financial difficulties contributes to improved quality of life, which is congruent to cancer survivorship. [ABSTRACT FROM AUTHOR]

Primary care providers, including general practice teams (GPTs), are well positioned within the community to integrate cancer survivorship care into ongoing health management. However, roles of GPT members in delivery of cancer survivorship care have not been explored. The purpose of this study is to explore these roles from the perspectives of General Practitioners (GPs), Practice Nurses (PNs) and Practice Managers (PMs). An interpretive qualitative study using semi‐structured in‐depth telephone interviews with ten GPs, nine PNs and five PMs was conducted. Interviews were recorded, transcribed and analysed using grounded theory methods. Perspectives of roles in delivery of cancer survivorship care were highly variable. Variation was evident among perceptions of needs of cancer survivors, individual team members' scopes of practice, and individual professional knowledge and skills. A lack of clarity in roles and responsibilities of GPT members was thought to contribute to a lack of consistency in survivorship care. Reducing variations in perceptions of survivorship care in the primary care setting should be a priority. Such efforts may include development of practical guidance to support GPT members to clarify scopes of practice within the team. In addition to accessible comprehensive education programs, other innovative, tailored individualised education approaches may be helpful. System‐level support in clarifying and supporting the roles of the primary care team is needed to facilitate a survivorship delivery system at general practice level where those within GPT can ensure that individual patients' needs are met in a timely and effective manner. [ABSTRACT FROM AUTHOR]

Background: In Australia, an aging population has intensified demand on residential aged care facilities, hospitals and palliative care services for end-of-life care. The likelihood of home death for cancer patients in South Australia has remained below 14%. Objectives: This research aims to investigate predictors for community death and preferred place of death of patients registered with an Australian community adult specialist palliative care service (SPCS). Methods: A consecutive cohort retrospective medical records and electronic database review of all referred patients who died between 1st January and 30th June 2017 was undertaken. Results: There were 456 registered patients who died in this period. The 62 rural patients and 32 patients with missing medical records were excluded. Of the remaining 362 patients, 62 did not have community face-to-face contact and were excluded. Of the 300 patients eligible, there were 143 females and mean age was 71 years. This study revealed an overall community death rate (private home and residential aged care facility) of 31.3% compared with private home death rate of 17%. There were two important predictors of community death. Firstly, family/caregiver preferred place of death had a far greater impact on likelihood of community death than patient preferred place of death. Secondly, the intensity of input from the whole palliative care team, in particular, community face-to-face visits and more specifically by nurses, were major predictors. Conclusion: Investing in community-based SPCSs may not only better support patient and family/caregiver preferences, and increase rates of community death but also reduces hospitalisation costs. [ABSTRACT FROM AUTHOR]

Introduction: Education on lymphoedema and lymphoedema risk is an essential part of the cancer care package. This study evaluated recall and retention of lymphoedema-linked education knowledge in patients following breast cancer surgery. Method: Seventy participants at risk of developing lymphoedema were assigned to a 1:1 or group education programme. Surveys captured self-reported recall of their lymphoedema education and demonstration of upper-limb exercises over 12 months. Results: Participant's ability to recall lymphoedema education and associated exercises decreased over time. Recall increased by 12 months but remained suboptimal. Delivery method and lymphoedema risk category were not significant factors affecting participants recall. Conclusion: Recall and retention of lymphoedema education was sub-optimal, however, participants with clinical symptoms demonstrated greater knowledge and performance. [ABSTRACT FROM AUTHOR]

As cancer patients face long-term health and psychosocial issues from their diagnosis and treatment, many patients are seeking medicinal cannabis to manage their symptoms and treatment side effects. This qualitative study aimed to explore attitudes, barriers, and concerns of cancer patients from one regional community in Australia to gain a better understanding of the experiences faced in using medicinal cannabis. Participants (n = 16) engaged in focus groups or semistructured individual interviews, and an inductive thematic analysis of data was undertaken. Four themes emerged from the data: perceived benefits, access difficulties, uncertainty, and issues of support. The findings revealed a need to provide easy access to accurate information and address the barriers faced by cancer patients in using medicinal cannabis. IMPLICATIONS Despite the growing body of clinical evidence, cancer patients may be faced with bureaucratic and social challenges in gaining access to medicinal cannabis that will require social workers' individual advocacy. Social workers should consider the roles that might be appropriate for them in advocating for policy and legislation changes around access, cost, and other barriers. Social workers working in oncology should consider the roles that might be appropriate for them in linking cancer patients to community support and resources, and in assisting cancer patients interested in medicinal cannabis, including an advocacy role. [ABSTRACT FROM AUTHOR]

Background: It has been suggested that single rooms for patients improve patient dignity and privacy and reduce infection transmission, but they can be socially isolating. It is not well understood how single rooms affect long-stay patients. Aims: To understand the experience of being an inpatient in a ward with singleroom design. Methods: A qualitative, phenomenological study was conducted using semi-structured interviews with patients (n=10) in a newly built cancer hospital with a 100% single-room haematology ward. Interviews were analysed using Colaizzi’s (1978) seven-step analysis. Findings: Patients described their experiences of their acute stay using the concepts of privacy, isolation and independence, as well as enabling sleep. Privacy enabled patients to have their own toilet, was perceived to aid infection control and provided silence. Privacy came at a cost of isolation, but patients re-framed this as expected and necessary for self-preservation. Furthermore, they were unsure as to whether other patients would reciprocate social contact and instead relied on the healthcare team. Patients sought independence during their acute stay as it enabled them to control the environment and create a space for healing. The ability to sleep and be rested was also a critical feature of patients’ stay. Conclusion: The research highlighted that haematology patients prefer single rooms. However, because they experienced isolation, it also highlighted the importance of facilitating and enabling peer support within the haematology setting. [ABSTRACT FROM AUTHOR]

Patients with incurable end-stage cancer (IESC) who are parenting minor-age children often experience parenting-related distress. Parenting concerns are not always addressed as part of routine hospital-based psychosocial care. Currently, there is a lack multidisciplinary health professional (HP) perspectives in this area. An exploratory study of hospital-based HP perspectives of adult patients' and coparents' parenting experiences, support needs, and parenting supportive care practice was conducted. Twelve multidisciplinary HPs from one Australian tertiary hospital participated in a semistructured focus group and interviews. Data were audio recorded, transcribed, and analyzed using thematic analysis. Results showed HPs were cognizant of patients' and coparents' diverse parenting support needs and experiences and other aspects that comprise best practice. However, multilevel organization, HP, and patient/coparent barriers impeded optimal practice. Barriers included a nonsystemized approach to screening patients' parenting status and parenting support needs, inadequate resources, limited professional support, hospital environment, and parent psychosocial factors. This article provides feasible options for addressing practice barriers. Reviewing what factors influence optimal parenting focus from interdisciplinary HP perspectives helped identify potential strategies that could influence a shift from medical-focused care to more holistic family-focused patient care. [ABSTRACT FROM AUTHOR]

Purpose This study explored the range of symptoms and supportive care provided by the multidisciplinary team in patients with head and neck cancer (HNC) undergoing concurrent chemoradiation therapy (CRT). Methodology A retrospective chart review of two electronic medical records was conducted over an 18-month period. Results A total of 26 patients met criteria; 17 reported symptoms entered against the variable values of the CTCAE v5. Common symptoms included xerostomia (grade 1/2), altered taste (grades 1/2), mucositis (grades 1/3), thick saliva (grades 1/2), and skin reactions (grade 2/3). Hospital admission was required for 80.8% of patients, 69.3% required a feeding tube, 100% of patients required oral supplements, and 61.6% needed intravenous (IV) hydration. Treatments breaks were limited to two patients. Conclusion This study highlights the complex symptom experience of patients treated with CRT for HNC and their need for supportive care, highlighting the contribution from all members of the multidisciplinary team. [ABSTRACT FROM AUTHOR]

Introduction: Progress in the early detection, diagnosis, and treatment of cancer has translated into more people in Australia living with and beyond cancer. Therefore, there is a larger number of people returning to work following cancer treatment while managing ongoing symptoms of cancer, and side effects of treatment. The purpose of this study was to explore the facilitators and barriers for return to work for someone with cancer, from the perspective of occupational therapists. Method: This study used a qualitative descriptive design. Participants were recruited via key contacts within the industry and relevant interest groups, and included eight occupational therapists with experience supporting someone with cancer to return to work. Data were collected in semi‐structured in‐depth Interviews which were audio recorded, transcribed verbatim, and analysed thematically. Findings: Two main themes were developed; expectations of the cancer experience versus reality, and vulnerability during return to work. Occupational therapists perceived that the person with cancer, employers, family members, co‐workers, and society underestimate the impact of ongoing cancer symptoms on return to work. Return to work was challenging as survivors face unexpected challenges due to ongoing fatigue, cognitive difficulties, or psychological factors. Fear of relapse, concerns regarding disclosure affecting how people with cancer are perceived at work, and worries of leaving the high levels of professional support during treatment, also affected return to work. Conclusion: Findings from this study may contribute to occupational therapists and people with cancer setting realistic expectations for the return to work experience. Furthermore, it may provide support for occupational therapists to work more effectively with their clients to facilitate a smoother transition back to work as a cancer survivor. [ABSTRACT FROM AUTHOR]

Background: Measurement of patients' healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. Methods: A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Results: No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics 'partially' captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusions: Existing tools are likely to miss key aspects of Indigenous peoples' experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people. [ABSTRACT FROM AUTHOR]

Background: Opportunities for cancer survivors' employment can both reflect and perpetuate health inequities, as employment is an important social determinant of health. Socio‐economic and geographic disadvantage is associated with greater difficulty finding work, but little is known about work needs of Australian cancer survivors living with disadvantage. Objective: This study examined survivor and health‐care professional (HCP) perspectives on barriers experienced by Australian cancer survivors experiencing disadvantage when attempting to remain at or return to work. Method: Focus groups and individual interviews were held with cancer survivors (N = 15) and oncology and primary HCPs (N = 41), focusing on communities at risk of disadvantage. Participants were asked about employment barriers and facilitators in general and in the context of disadvantage. Themes were identified using framework analysis. Results: Geographic and socio‐economic disadvantage resulted in specific individual‐ and system‐level barriers. These related to distance from treatment and support services and limited availability and suitability of work for survivors living with geographic disadvantage, and limited availability, security, and flexibility of work and previous unemployment for survivors living with socio‐economic disadvantage. Identified needs included system‐level changes such as public and workplace‐level education, legislative and policy changes, and better access to resources. Conclusions: Cancer survivors living with disadvantage experience limited access to flexible employment opportunities and resources, further perpetuating their disadvantage. Promotion of health equity for cancer survivors living with disadvantage requires systemic changes to support attempts to remain at/return to work. Patient or public contribution: This study included cancer survivors and HCPs as investigators, authors and participants. [ABSTRACT FROM AUTHOR]

A life-threatening disease such as breast cancer with its pervasive nature of uncertainty can lead to feelings of disempowerment. Nonetheless, survivors may reconstruct their identity within optimism and a celebration of a new self. In this qualitative constructionist study, we explored survivors' experiences, meaning-making, and identity transformation. Semi-structured interviews were undertaken with 11 women who identified as breast cancer survivors. Participants were aged 35 years old or above and were in post-diagnosis for at least 3 years. Interview data were collected and analyzed using thematic techniques. We identified three master themes: Diseased Self, focused on emotional distress and the presentation of a façade; Coping Self, explored resilience and post-traumatic growth; and Transformed Self, engaged in presentations of self-image, meaning-making, and psychological ownership addressing survivorship and empowerment. The findings may be used to inform guidelines and support for cancer survivors considering the impact of diagnosis, treatment, and post-treatment experiences on self-identity. [ABSTRACT FROM AUTHOR]

PURPOSE The aim of this economic assessment was to evaluate the impact of a new nurse-led model of care, the Symptom and Urgent Review Clinic (SURC), for patients with cancer experiencing disease- or treatment-related symptoms. METHODS An economic assessment was undertaken to estimate costs of the SURC from the service funder perspective and to compare the cost with cost offsets stemming from the implementation of the SURC. The cost offsets focused on the changes in emergency department (ED) presentations and inpatient admissions during a comparable 6-month period before and after the SURC implementation. Costs were analyzed in 2018 Australian dollars, and return on investment was calculated by comparing the cost offsets in the ED and inpatient units with the cost of the SURC. RESULTS After the implementation of the SURC, patients were less likely to present to the ED (7.2% v 8.5%; P = .01), and patients who did present to the ED were more likely to be admitted to inpatient units (78% v 71%; P = .03) for additional treatment. The post-SURC period had a net cost savings of $37,090 compared with the pre-SURC period. From the service funder perspective, the SURC achieved an investment return of $1.73 for every dollar invested in the new service. CONCLUSION Our study establishes the economic credentials of a new care model using empirical linked hospital service data. The SURC presents a new cancer care service for policy consideration from an economic standpoint. It demonstrates an efficient approach to hospital resource allocation to deliver quality cancer care. [ABSTRACT FROM AUTHOR]

Parenting support needs of patients diagnosed with incurable end-stage cancer (IESC) with young families are not addressed as part of routine hospital health care. Their support needs and experiences of hospital-based parenting support are largely unknown. The study aims to explore hospital-based parenting support delivery from patient and co-parent perspectives in context to their parenting experience and support needs. Exploratory, prospective, cross-sectional qualitative design. Semi-structured in-depth interviews with eight adult patients with IESC and four co-parents purposively recruited from a tertiary hospital in Melbourne, Australia. Findings were thematically analyzed. Parents desire support with challenging multidimensional parenting issues. Organization, health professionals (HP), and parental-based factors hinder and facilitate optimal service provision. Responsibility rests with HP to initiate parenting support. Interdisciplinary family-focused support offered throughout IESC health-care journey is key. Patient-centered family-focused support is warranted. Surmountable challenges lie with management and HPs to address barriers affecting optimal service delivery. [ABSTRACT FROM AUTHOR]

Survivorship treatment summaries and care plans are increasingly incorporated into cancer care but there are limited data on their accuracy and acceptability. We have evaluated written care plans developed as part of a once‐off, nurse‐led survivorship consultations across four medical oncology clinics in South Australia as part of a state‐wide pilot. While the accuracy of treatment summaries was high, level of detail in care plans was moderate to low, as was survivors' perception of plans' utility. [ABSTRACT FROM AUTHOR]

Background: Advanced Practice is recognized by the Royal College of Nursing as a distinctive level of practice encompassing direct care provision, education, research, and management. Advanced Nurse Practitioners (ANP) are educated to MSc level and assessed as competent in their field. A teenage and young adult advanced nurse practitioner (TYA ANP) was introduced in 2015, one of few within the United Kingdom. This service evaluation assesses the impact of the new role on patient and staff experience. Aims/Objectives: To evaluate the impact of TYA ANP role on the experience of TYA oncology patients and the multidisciplinary team (MDT) and to assess perception of quality, safety, and efficiency of this role. Methodology: Retrospective data collection using Australia Nurse Practitioner Study Questionnaire to MDT and patients treated within the TYA unit since the ANP role was introduced. Descriptive statistics were used to analyze outcomes of the data collected. Results: Eighty-six percent of patients and 90% of staff felt they understood the ANP role. While 100% of patients felt the TYA ANP service was a success, met their needs, prescribed correctly, offered holistic and safe care, and had a positive impact on care. Furthermore, 86% of patients felt the TYA ANP service was easy to use and 90% of staff felt the TYA ANP service met the needs of the patients. Discussion/Conclusion: Overall patients and staff reported a positive experience particularly on correct diagnosis, safe prescribing, and having a positive impact on care. Areas for improvement include wider understanding of the role. [ABSTRACT FROM AUTHOR]

Background: Immunotherapy has resulted in unprecedented improvements in survival and maintained quality of life for many patients with advanced melanoma. However, durable responses are observed in only a minority of patients, and severe treatment side effects are experienced by 5%–30%. There are no reliable tests that can differentiate between patients who are likely to respond to immunotherapy and those who will not. Hence, new challenges have arisen as clinicians try to facilitate patients in their decision‐making regarding immunotherapy. Furthermore, little is known about the real‐world patients' experience and understanding of immunotherapy outside the clinical trial setting. Here, we explore the perspectives of patients undergoing immunotherapy for melanoma and focus on factors that influenced their treatment decision‐making. Materials and Methods: Twenty‐three in‐depth semistructured interviews were conducted with patients receiving pembrolizumab for stage IV melanoma at an Australian public cancer hospital. Patients were recruited at a range of time points after commencing therapy, and their experience of treatment was explored. Interviews were audio recorded, transcribed verbatim, coded, and analyzed thematically. Results: Immunotherapy is viewed as a symbol of hope, with high‐profile anecdotes reinforcing this perception. Only a minority of patients expressed a good understanding of the likely efficacy and potential treatment side effects. Patients are reliant on their clinicians' recommendation regarding immunotherapy treatment decisions. Conclusion: Novel treatments such as immunotherapy provide significant hope for patients. This may influence their preference for immunotherapy over and above the usual considerations of the trade‐off between efficacy and toxicity. Careful counsel and individualized patient resources may further facilitate treatment decision‐making. Implications for Practice: This study highlighted some of the misconceptions held by patients that need to be addressed when discussing the possibility of receiving treatment with immunotherapy for advanced melanoma. Patients placed a lot of importance on high‐profile anecdotes rather than truly understanding likely outcomes of treatment based on personal circumstances. The majority of patients had a poor understanding of the potential side effects and long‐term implications of treatment with immunotherapy. Careful counsel is required in order to facilitate informed decision‐making about treatment and to ensure possible side effects are known and appreciated. Further research is needed to develop tools to aid decision‐making in everyday clinical practice. It is important for oncologists to understand the factors that underpin shared decision making. This article explores real‐world experiences of patients with advanced melanoma receiving pembrolizumab, with a focus on factors that were important to patients when deciding to start immunotherapy. [ABSTRACT FROM AUTHOR]

Objective: While 60%‐70% of people would prefer to die at home, only 14% do so. Families in a rural environment feel particularly unsupported in fulfilling this last wish of their loved one, which reflects the general shortage of health care workforce and resource allocation to institutions. The aim of this study was to describe the experience of families and nurses with extended rural palliative care to support dying at home. Design: Semistructured interviews were conducted with family members and nurses. Process data were included to describe the frequency and nature of contacts. The results were analysed using descriptive analysis. Settings: A rural town in Northern Victoria, Australia (Australian Statistical Geography Standard‐Remoteness Area). Participants: Ten family members and four nurses were interviewed. Main outcome measures: Experience with the extended palliative care service and with the dying at home process. Results: All patients in the project died at home. The families were very positive about the extended palliative care; it increased their familiarity with dying, and had a positive impact on bereavement. The nurses were equally positive, but also commented on the need to debrief and on the heavy emotional toll the work takes. Conclusions: Rural care support for dying at home can be realised. This study has demonstrated the positive impact of an end‐of‐life service, while at the same time pointing to concerns of the nursing staff on the suitability of the model of care. Health care workers and communities alike need to be educated and have conversations on end‐of‐life care. [ABSTRACT FROM AUTHOR]

The purpose of this study was to explore the experiences of parents and co-parents where one parent was diagnosed with cancer with specific interest in the impact of the disease on their role as a parent and the supports that were found to be useful in managing the ongoing care of their children. A qualitative research method using semi-structured interviews and thematic network analysis techniques was used. Participants included adult English-speaking parents receiving treatment for a new diagnosis of cancer at a major tertiary oncology research and treatment centre, with prior social work involvement. Participants reported multiple, complex layers of need. Four salient themes were evident: (a) emotional impact of a cancer diagnosis on the patient, (b) accessing professional supports, (c) children's understanding, and (d) meeting children's needs. Parents described difficulties in managing emotionally, physically, and existentially. Accessing supports within the healthcare service and community was paramount, as was guidance around communicating with children. Receiving a proactive service from a social worker was highly regarded. The results demonstrate that it is essential to respond to the needs of parents with cancer in order to minimise prolonged emotional distress. Parents diagnosed with cancer have unique needs including concern about the impact on their children and families. Social workers should be proactive in identifying patient needs and ensuring services and supports are provided in a timely way. [ABSTRACT FROM AUTHOR]

Our qualitative study addresses a significant gap in the scholarship on return‐to‐work after cancer by examining the impact of secondary lymphoedema on individuals in paid employment. We undertook an Interpretive Phenomenological Analysis of interviews with 14 cancer survivors (13 women) with secondary lymphoedema in Sydney, Australia. Our interviewees were engaged in paid employment during and after their lymphoedema diagnosis. In addition to difficulties with tasks involving manual or repetitive labour, interviewees highlighted the importance of work for maintaining their identity. They also outlined the critical role that significant others at work, such as supervisors and colleagues, play in maintaining that identity. At the same time, their need for privacy and control over to whom they disclosed their lymphoedema diagnosis emerged strongly from our interviews. Finally, we present the coping mechanisms that our interviewees utilised to manage their lymphoedema in the workplace, including covering the affected limb with long sleeves, changing the tasks they completed, or even changing employers. In addition to our contribution to the scholarship, we highlight implications for employers, future research, and policy makers. [ABSTRACT FROM AUTHOR]