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Purpose: This study aimed to: determine the supportive care available for Australian patients with High Grade Glioma (HGG) and their carers; identify service gaps; and inform changes needed to implement guidelines and Optimal Care Pathways. Methods: This cross-sectional online survey recruited multidisciplinary health professionals (HPs) who were members of the Cooperative Trials Group for Neuro-Oncology involved in management of patients diagnosed with HGG in Australian hospitals. Descriptive statistics were calculated. Fisher's exact test was used to explore differences between groups. Results: 42 complete responses were received. A majority of MDT meetings were attended by a: neurosurgeon, radiation oncologist, medical oncologist, radiologist, and care coordinator. Less than 10% reported attendance by a palliative care nurse; physiotherapist; neuropsychologist; or speech therapist. Most could access referral pathways to a cancer care coordinator (76%), neuropsychologist (78%), radiation oncology nurse (77%), or psycho-oncologist (73%), palliative care (93–100%) and mental health professionals (60–85%). However, few routinely referred to an exercise physiologist (10%), rehabilitation physician (22%), dietitian (22%) or speech therapist (28%). Similarly, routine referrals to specialist mental health services were not standard practice. Nearly all HPs (94%) reported HGG patients were advised to present to their GP for pre-existing conditions/comorbidities; however, most HPs took responsibility (≤ 36% referred to GP) for social issues, mental health, symptoms, cancer complications, and treatment side-effects. Conclusions: While certain services are accessible to HGG patients nationally, improvements are needed. Psychosocial support, specialist allied health, and primary care providers are not yet routinely integrated into the care of HGG patients and their carers despite these services being considered essential in clinical practice guidelines and optimal care pat

Background: Cancer survivors living in rural and remote areas of Australia experience poorer health outcomes than their metropolitan counterparts. Telehealth provides opportunities for the delivery of survivorship care. Aim: To investigate the preparedness of the cancer nursing workforce in Australia to deliver survivorship care using telehealth. Methods: Through a nationally disseminated online survey, nurses’ perceptions, attitudes and use of telehealth to deliver cancer survivorship care were assessed using the Technology Acceptance Model (TAM21) scale. Educational and occupational characteristics were also collected. Data were analysed using descriptive statistics and logistic regression. Findings: Seventy-nine respondents completed the survey. Fifteen nurses (19%) used telehealth for cancer survivorship care, with nurses in Queensland and New South Wales five times more likely to use telehealth. Telehealth users had significantly higher mean scores indicating greater acceptance of telehealth for each TAM21 domain and overall (all p < 0.05) compared to nonusers. Telehealth, particularly videoconferencing (67%), and email/messaging (80%) were most commonly used to deliver education and information to cancer survivors. Discussion: While cancer nurses have positive attitudes towards the use of telehealth for survivorship care, actual use is low. Attitudes are therefore poor predictors for telehealth use. The COVID-19 pandemic has exposed challenges experienced by nurses with telehealth-related practice. Conclusion: Cancer nurses are well placed to provide telehealth-facilitated survivorship care. However, the potential of telehealth to close the disparity gap for survivors living in rural and remote areas in Australia, is far from realised. In addition to further research required, lessons learned from the pandemic will be critical to inform the development and implementation of telehealth-facilitated cancer survivorship care.

Background: Immune and targeted therapies continue to transform treatment outcomes for those with metastatic melanoma. However, the role of palliative care within this treatment paradigm is not well understood. Aim: To explore bereaved carers’ experiences of immune and targeted therapy treatment options towards end of life for patients with metastatic melanoma. Design: An interpretive, qualitative study using a social constructivist framework was utilised. Interviews were recorded, transcribed and analysed using grounded theory methods. Setting/participants: Participants (n = 20) were bereaved carers of patients who had received some form of immune and/or targeted therapy at one of three Australian metropolitan melanoma treatment centres. Results: Carers struggled to reconcile the positive discourse around the success of immune and targeted therapies in achieving long-term disease control, and the underlying uncertainty in predicting individual responses to therapy. Expectations that immune and targeted therapies necessarily provide longer-term survival were evident. Difficulty in prognostication due to clinical uncertainty and a desire to maintain hope resulted in lack of preparedness for treatment failure and end of life. Conclusion: Immune and targeted therapies have resulted in increased prognostic challenges. There is a need to engage, educate and support patients and carers to prepare and plan amid these challenges. Educational initiatives must focus on improving communication between patients, carers and clinicians; the differences between palliative and end-of-life care; and increased competency of clinicians in having goals-of-care discussions. Clinicians must recognise and communicate the benefit of collaborative palliative care to meet patient and family needs holistically and comprehensively.

Introduction: Telehealth, the delivery of services using information and communication technologies, offers potential benefits to cancer survivorship care, including the facilitation of communication, co-ordination and continuity of care, overcoming geographical barriers, and enabling underserved populations to access care. Despite these potential benefits, nurses’ abilities and willingness to deliver survivorship care via telehealth has not been fully explored. Objectives/Aims: To assess cancer nurses’ preparedness for and use of telehealth to deliver cancer survivorship care. Description/Methodology: Registered nurses employed in cancer care roles in Australia were contacted through the Cancer Nurses Society of Australia and invited to complete an online questionnaire. Nurses’ perceptions of the usefulness, ease of use, attitude towards and intention to use telehealth to deliver cancer survivorship care were assessed using the Technology Acceptance Model scale (TAM21). Self-reported use of telehealth for cancer survivorship care, professional and demographic characteristics were also collected. Results/Outcomes: Seventy-nine eligible cancer nurses completed the questionnaire. Most worked in a metropolitan area (60%) and had 11+ years’ experience (64%). Fifteen nurses (19%) used telehealth for cancer survivorship care. Videoconferencing (67%), email/messaging (80%), and mobile apps (20%) were most commonly used to inform and educate survivors. Telehealth users had significantly higher mean scores indicating greater acceptance of telehealth for each TAM21 scale and overall (all p<0.05) compared to non-users. Logistic regression showed that the odds of telehealth use were five times higher amongst nurses in New South Wales or Queensland compared to other states (OR 5.230, 95% CI 1.241-22.037, p=0.024). Results should be interpreted cautiously given the small sample size. Conclusion: Despite high acceptance, nurses’ use of telehealth

The population of people living with cancer who need and desire survivorship care is growing with Australia’s ageing population, improved screening, more effective anticancer therapies and increasing consumer expectations. The delivery of cancer survivorship care, particularly to those who live in rural and remote areas, can be facilitated by technological solutions such as telehealth. Telehealth, the delivery of services using information and communication technologies, offers benefits to cancer survivorship care. These can include the facilitation of communication, coordination and continuity of care, the overcoming of geographical barriers and enablement of underserved populations to access care. Indeed, a growing body of literature in the area of consumer experiences with telehealth suggests that care management away from the hospital environment can minimise disruption to consumers’ lives, enhance independence and provide consistency and continuity of contact. Despite these benefits, the capacity of the cancer nursing workforce, who have an integral role in survivorship care, to deliver this care using telehealth is not well understood. A national study was conducted to investigate cancer nurse preparedness and use of telehealth to deliver survivorship care. Despite high acceptance and positive attitudes towards telehealth, actual use of telehealth by cancer nurses was low. The results of this study reflect the need to understand the barriers and facilitators to cancer nurses’ use of telehealth in survivorship care and to understand implementation requirements of telehealth-facilitated models of cancer survivorship care. Without this knowledge, opportunities to improve access for people living with cancer to survivorship care may be missed.

Background: Recent advances in advanced melanoma therapies are associated with improved survival for some patients. However, how patients with diagnoses of advanced disease and their carers experience this expanding treatment paradigm is not well understood. Objectives: To explore bereaved carers’ accounts of the trajectory of advanced melanoma involving treatment by immune or targeted therapies, to build an understanding of their experiences of care relating to diagnosis and prognosis. Methods: A qualitative exploratory design, using methods drawn from grounded theory, was adopted. Analyses drew on in-depth interviews with 20 bereaved carers from three metropolitan melanoma treatment centres in Australia. A flexible interview guide and structured approach to concurrent data collection and analysis were applied. Results: Carers described qualities of the experience, including the shock of diagnosis after a sometimes-innocuous presentation with vague symptoms. They reported an unclear prognosis with complexity arising from interplay between an uncertain disease trajectory and often ambiguous expectations of outcomes of emerging immune and targeted therapies. Uncertainty dominated carers’ experiences, increasing the complexity of care planning. Conclusions: Effective communication of an advanced melanoma diagnosis and prognosis is critical. Recognition of the uncertainty inherent in the benefit of immune and targeted therapies in a constructive manner may facilitate more timely and effective care-planning conversations between patients, carers and medical specialists.

Aim and objective To synthesise evidence of registered nurses' and midwives' experiences with videoconferencing and identify perceptions of the appropriateness, meaningfulness and feasibility of this technology in professional and clinical practice. Background Videoconferencing is a form of telehealth that can facilitate access to high-quality care to improve health outcomes for patients and enable clinicians working in isolation to access education, clinical supervision, peer support and case review. Yet use of videoconferencing has not translated smoothly into routine practice. Understanding the experiences of registered nurses and midwives may provide practitioners, service managers and policymakers with vital information to facilitate use of the technology. Design A qualitative meta-synthesis of primary qualitative studies undertaken according to Joanna Briggs Institute methodology. Method A systematic search of 19 databases was used to identify qualitative studies that reported on registered nurses' or midwives' experiences with videoconferencing in clinical or professional practice. Two reviewers independently appraised studies, extracted data and synthesised findings to construct core concepts. Results Nine studies met the criteria for inclusion. Five key synthesised findings were identified: useful on a continuum; broader range of information; implications for professional practice; barriers to videoconferencing; and technical support, training and encouragement. Conclusions While videoconferencing offers benefits, it comes with personal, organisational and professional consequences for nurses and midwives. Understanding potential benefits and limitations, training and support required and addressing potential professional implications all influence adoption and ongoing use of videoconferencing. Relevance to clinical practice Registered nurses and midwives are well placed to drive innovations and efficiencies

Introduction: Access to speech-language pathology services for children in rural and remote communities is often limited. Telehealth is increasingly used to provide these services to schools, demonstrating high satisfaction with both service providers and recipients, but the requirements for successful program implementation are as yet unclear. We aimed to explore the implementation requirements for a telehealth speech-language pathology service for children from the perspective of a rural school. Methods: A qualitative approach, supplemented by program activity data, was used to understand the experiences and perceptions of the benefits, limitations, enablers and barriers of a telehealth speech-language pathology program delivered to a school servicing approximately 400 children in a small rural town in the state of Queensland, Australia. Thematic analysis was conducted of transcripts of individual semi-structured interviews with nine school teaching staff and field notes of informal discussions regarding 85 speech-language pathology telehealth sessions (n = 9 children) during program establishment and implementation. Results: The speech-language pathology telehealth service was acceptable to teaching staff at the rural school, who cited improved access, the suitability of the technology for child engagement, and perceived effectiveness. Implementation issues were highlighted as critical to program success and scalability, particularly staff workload, technological issues, communication processes, and sustainability. Conclusion: School-based speech-language pathology services delivered via telehealth were perceived as a suitable way of increasing access for children by rural school staff. Future implementations of telehealth speech-language pathology programs should prospectively consider workload implications and develop strategies to communicate with and involve sc

Introduction The aim of this study was to explore how telehealth facilitates or impedes the provision of culturally appropriate healthcare to Indigenous Australians from the perspective of staff at an Aboriginal Community Controlled Health Service (ACCHS). Methods An exploratory qualitative study was performed. Semi-structured interviews were conducted with nine ACCHS staff. Interview transcripts were analysed using thematic analysis. Results One central theme and three sub-themes were identified. The central theme of Care provided in a supportive environment describes how telehealth enabled specialist consultations to be conducted in the safe environment of an ACCHS instead of a mainstream health service. The first sub-theme described how telehealth improved affordability and convenience and brought a reduction in the stress of healthcare. The second sub-theme explained the importance of the presence of an Indigenous health worker to facilitate culturally appropriate healthcare. The third sub-theme described how telehealth supported a holistic view of health. Discussion Our findings show culturally appropriate healthcare may be enhanced by the use of telehealth because it allows care to be provided in the supportive environment of an ACCHS. It allows the community member to have the advocacy and assistance of an Indigenous health worker and reduces the burden of travel and dislocation from community and family.

Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or nonrandomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, one non-randomized controlled, and 10 single group pre-post trials enrolled more than 411 participants. Five group, four practice/process change and four individual interventions assessed satisfaction (12 studies), knowledge (four studies) or information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.

Introduction Many haematological malignancy survivors report long-term post-treatment physiological and psychosocial effects. Objectives This study examined cancer nurses’ perception of their role, confidence levels, practices and barriers in relation to survivorship care provision for patients with haematological malignancies. Methods Approximately 1300 cancer nurses were invited to participate in a survey. The survey was distributed to all cancer nurses at a Queensland tertiary cancer centre and via email through two Australian professional cancer nursing bodies. Results In total, 423 cancer nurses (33%) completed the survey. The majority of participants agreed that all survivorship interventions included in the survey should be within their role. Nurses were least confident in discussing fertility (M=5.93, SD=2.66), employment and financial issues with patients (M=6.19, SD=2.66) and discussing information about identifying signs of cancer recurrence (M=6.43, SD=2.69), on a 11-point scale from 0 to 10 with higher scores indicating greater confidence. The least frequently performed interventions included discussing fertility, intimacy and sexuality issues, and communicating survivorship care with the patient’s primary care providers, with over 60% of participants reporting not performing these interventions often. The most significant barriers perceived by participants were lack of dedicated end-of-treatment consultation (M=2.62, SD=1.13), time (M=2.58, SD=0.94), and an appropriate physical location(M=2.21, SD=1.01), on a 5-point scale (0=not at all; 4=a great deal). Conclusions The strong support from nurses for their role in survivorship care highlights opportunities that have not yet been adequately developed. Barriers identified in this survey should be considered in the design of future survivorship care models.

The scope of advanced practice nursing roles has expanded, however few adequately powered trials have reported on how such roles impact on patient and health service outcomes. A new prostate cancer specialist nursing (PCSN) service was established in 12 hospitals in Australia providing a unique opportunity to evaluate the impact of advanced nursing roles on patient and health service outcomes. Separate cohorts of men treated for primary or recurrent prostate cancer were assessed at two time points: - (1) six months before implementation; - (2) a six month period following 12 months of service implementation. Patient reported outcomes (PROMs) assessed were care experiences, supportive care needs, severity of prostate cancer specific symptoms, quality of life and decisional regret. Bivariate analyses were conducted to identify covariates to be adjusted for when comparing outcomes. Multiple regression analyses were used. Adjusted covariates were entered in models at the first step, and the group variable (PCSN or no PCSN) entered at the last step. Data were analysed for 302 pre- and 260 post-implementation patients. After adjusting for demographic differences between groups, compared to patients who did not have access to a PCSN(pre-implementation group), patients who did have access to a PCSN (post-implementation group) reported a significantly higher level of symptom severity in relation to urinary incontinence (b = -0.10, p = 0.03) and sexual function (b = -0.10, p = 0.02), but showed significantly lower need in the area of sexuality (b = 0.12, p = 0.03) and had better experiences of in-hospital care (b = -0.15, p = 0.001). Patients’ health related quality of life and level of decisional regret did not differ according to whether they did or did not access a PCSN. While men who had access to a PCSN reported higher symptom severity in areas of urinary and sexual function and no differences were noted between groups in overall quality of life, men who accessed a PCSN

Introduction - It remains unclear why many primary brain tumour patients do not use available supports or support services despite reporting high levels of unmet supportive care needs and distress. Objectives - To understand the reasons why adults with primary brain tumours do not use formal supports or services when reporting a need for help. Methods - Following a quantitative survey of supportive care needs and support/service utilisation (reported elsewhere), semi-structured telephone interviews were conducted with a subsample of 19 adults recently diagnosed with primary brain tumours. Thematic analysis was used to identify recurring ways participants described their use of supportive care services. Results - Analysis identified three themes: that they did not need help, did not want help, and experienced barriers to support utilisation. When indicating that they did not need help, participants typically reported positive experiences relative to their expectations or the experiences of others; difficulties recognising their needs due to cognitive change; ignoring their needs as a coping strategy; or utilising their own or informal resources. When reporting not wanting help, participants mentioned preferences to self-manage problems or accept issues; foci other than supportive care needs; conscious choices not to seek help; and questioning of the value of supports or services available. Barriers to support service utilisation reported were unawareness of needs, supports available, and their relationship; incapacity due to tumour/treatment; access issues; and unsuccessful help-seeking attempts. Conclusions - Recognition of patients’ difficulties in recognising their needs and preferences for self-management or informal supports suggest new avenues for meeting their unmet needs.

Objectives - Understanding the unique needs of urban and rural/remote cancer patients will help to establish priorities in health service delivery. This paper compares the supportive care needs of prostate cancer patients living in urban and rural/ regional areas in Australia. Methods - A total of 567 men (185 rural/ regional and 372 urban) who received care from PCFA’s Prostate Cancer Specialist Nurses in 12 settings self-reported the extent of their unmet needs in relation to physical and daily living, psychological, sexuality, patient care and support, health system and information, and prostate cancer specific needs using the SCNS-SF34. Results - The proportion of patients who reported unmet needs was low in general. Compared to urban patients, rural/regional patients reported lower levels of unmet needs in nearly every domain except for sexuality needs. The most frequently reported moderate or high unmet needs among all patients were: urinary incontinence, feeling like lost part of manhood, changes in sexual feelings, changes in sexual relationships, concerns about the worries of those close to you, fears about the cancer spreading, uncertainty about future, not being able to do the things you used to do. Conclusions - Findings highlight the common unmet needs among prostate cancer patients nationally. The higher levels of unmet needs for men in urban areas compared to rural/regional areas warrant further investigation; however, this may reflect differences in available supports in these centres. The higher level of unmet sexuality-related needs amongst rural/ regional compared to urban patients suggests more attention should be given to provision of specialist sexual health services for these regions.

With improved treatment regimes, an increasing number of glioma patients are becoming long-term cancer survivors. Research has shown a significant number of cancer survivors and their family caregivers experience psychosocial and physical problems, and knowledge of these is essential to develop new interventions or models of care for these groups. This study describes the survivorship care needs and quality of life of long-term glioma survivors or their family caregivers in Australia. A cross-sectional study involving adult glioma survivors (high or low grade glioma, at least 2 years post-diagnosis) and their primary family caregivers across Australia is proposed. We will recruit up to 100 patients and 75 caregivers through study promotion to community and support organisations. Participants will be asked to complete the Functional Assessment of Cancer Therapy (FACT)-Brain, Depression Anxiety Stress Score 21 (DASS-21), Supportive Care Needs Survey (SCNS-34), Self-Administered Comorbidity Questionnaire (SCQ), demographic/medical questions, and open-ended questions regarding the impact of the diagnosis on their activities of daily living, as well as the impact of the disease on their working and social relationships. Caregivers will complete the Supportive Care Needs Survey for Partners and Caregivers (SCNS-P&C45), Caregiver Reaction Assessment, Clinical Care Tasks, DASS-21 and SCQ. Data will be analysed and patient-caregiver dyadic data matched. Existing research suggests long-term glioma survivors are likely to have specific survivorship care needs regarding cognition, neurological deficits, and psychological well-being. This project will provide recommendations for interventions to address the unmet needs of people living with glioma and their caregivers.