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This paper explores the enormous variation in views, championing behaviours and impacts of liaison people: staff nominated to facilitate, tailor and promote SPIRIT (a research utilisation intervention trial in six Australian health policy agencies). Liaison people made cost/benefit analyses: they weighed the value of participation against its risks and demands in the context of organisational goals, knowledge utilisation norms, epistemology and leadership support. There was a degree of self-fulfilment (organisations got what they put in), but SPIRIT could not always be tailored to address local knowledge needs. We present nine propositions for identifying and supporting liaison people in similar interventions.

Aims: Translation of evidence-based psycho-oncology interventions into routine care can significantly improve patient outcomes, yet effective implementation remains challenging due to numerous real-world barriers. A key factor that may influence implementation is organisational readiness for change. This mixed method study sought to identify factors associated with organisational readiness for implementing the Australian clinical pathway for the screening, assessment and management of anxiety and depression in adult cancer patients (ADAPT CP).Methods: We collected data from multidisciplinary staff across six Australian cancer services who were preparing to implement the ADAPT CP. Services were categorised as having 'high' versus 'mid-range' organisational readiness based on a median split on the Organizational Readiness for Implementing Change (ORIC) questionnaire (score range = 12-60). Qualitative data from the semi-structured interviews based on the Promoting Action Research in Health Services (PARiHS) framework were analysed thematically and compared for services with high- versus mid-range organisational readiness.Results: Three services with high- (mean ORIC range, 52.25-56.88), and three with mid-range (range, 38.75-46.39) organisational readiness scores were identified. Staff at services reporting higher readiness described a more collaborative and proactive service culture, strong communication processes and greater role flexibility. They also reported greater confidence in overcoming anticipated barriers and clearer strategies for addressing issues.Conclusions: Levels of organisational readiness were related to distinct qualitative themes. Targeting these issues in services where readiness is mid-range or low prior to full-scale roll-out may improve staff levels of confidence and efficacy in implementing psycho-oncology-focused interventions. [ABSTRACT FROM AUTHOR]

This study aimed to ascertain the systemic barriers encountered by oncology health professionals (HPs) working with patients from ethnic minorities to guide the development of a communication skills training programme. Twelve medical and five radiation oncologists and 21 oncology nurses were invited to participate in this qualitative study. Participants were interviewed individually or in a focus group about their experiences working with people from minority backgrounds. All interviews were transcribed verbatim and analysed thematically. HPs encountered language and communication barriers in their interactions with patients and their families, which were perceived to impact negatively on the quality and amount of information and support provided. There was a shortage of, and poor processes for engaging, interpreters and some HPs were concerned about the accuracy of interpretation. HPs expressed a need for training in cultural awareness and communication skills with a preference for face‐to‐face delivery. A lack of funding, a culture of “learning on the job”, and time constraints were systemic barriers to training. Oncologists and oncology nurses encounter complex challenges in clinical interactions with minority patients and their families, including difficulties working with interpreters. Formal training programmes targeted to the development of culturally competent communication skills are required. [ABSTRACT FROM AUTHOR]

Australia has a thriving Psycho-Oncology research and clinical community. In this article, the Australian health system in which Psycho-Oncology is embedded is described. Clinical Psycho-Oncology services are outlined, in terms of their composition, processes and reach. The development of the internationally ground-breaking Australian Psychosocial guidelines for the care of adults with cancer is described. Two large Psycho-Oncology organisations which are strongly linked to mainstream Oncology organisations are discussed: the Australian Psycho-Oncology Society (OzPos, a primarily clinician-led and focused organisation) and the Psycho-Oncology Co-operative Research Group (PoCoG, a national cancer clinical trial group). OzPos is a special interest group within the Clinical Oncology Society of Australia, while PoCoG is one of 14 cancer clinical trial groups funded by the national government. It is these strong connections with major multidisciplinary cancer organisations, and a culture of collaboration and co-operation, that have made Psycho-Oncology grow and thrive in Australia. Examples of large collaborative programs of Psycho-Oncology research are provided, as well as the mechanisms used to achieve these outcomes. [ABSTRACT FROM AUTHOR]

Family members (FMs) regularly attend cancer consultations with patients, may assume an array of roles (e.g. emotional, informational) and their involvement may result in benefits and/or challenges. Little is currently known about how oncology health professionals (HPs) view FMs who accompany a patient in consultations. This study aimed to explore the attitudes and practices of Australian oncologists and oncology nurses regarding family involvement in consultations. Eleven oncologists and 10 nurses from a range of subspecialties and tumour streams participated in semi-structured interviews. Interviews were transcribed and qualitatively analysed using framework analysis methods. Five relevant themes were identified: (1) the varied and dynamic nature of family roles during consultations; (2) positivity towards FMs; (3) the benefits of family involvement to the FM themselves; (4) current HP practices to facilitate positive family involvement; and (5) the challenges of family involvement in consultations and HP practices to manage them. Overall, participants held mostly positive attitudes towards family involvement. Although they identified a number of challenges which can arise when family are involved, many noted these situations are the exception, that there are strategies which can help to overcome the challenges, and that the benefits of family involvement typically outweigh the costs. [ABSTRACT FROM AUTHOR]

Purpose: Few studies have explored coping strategies used by cancer survivors to deal with fear of cancer recurrence (FCR), and little research has been conducted on the specific content of recurrence fears. This study aims to qualitatively explore the strategies used by younger breast cancer survivors to cope with FCR and whether women with low, medium and high levels of FCR employ different coping strategies. An additional aim was to understand the specific content of worst recurrence fears.Method: Twenty Australian and 10 Canadian women aged ≤ 45 years diagnosed with stages 0-II disease at least 1 year prior completed telephone interviews. The transcripts of audio-taped interviews were analysed using the qualitative methodology of transcendental realism.Results: Women with higher FCR described using distraction and avoidance and fewer coping skills. The fear of death was a common worst fear at all levels of FCR. However, participants with higher FCR described more elaborate fears of death often involving themes of pain and suffering. Cross-cultural differences were not observed.Conclusions: Women with higher FCR report using fewer and more avoidance-based coping techniques. Whilst many participants feared death, those with higher FCR reported more elaborate death fears. Women with high levels of FCR may benefit from learning a greater repertoire of coping skills. Understanding the specific content of FCR can help refine existing psychological treatment protocols for FCR. Implications for FCR treatment are discussed. [ABSTRACT FROM AUTHOR]

The article presents a study which aims to train doctors in collaborative and ethical communication regarding informed consent and assess the impact of training on the behaviour, stress and satisfaction of a physician. It shows that doctors strongly supported the training and did not demonstrate reduced stress and burnout. Results suggest the potential of training to improve a number of aspects of obtaining informed consent.

The objective of this study was to understand Australian palliative care nurses' experience with existential/spiritual interventions and their critical appraisal of Outlook. Existential/spiritual interventions are showing positive results with palliative care patients. The majority of interventions are conducted by nonnurses, yet nurses are the most populous health care workers and are willing to provide holistic care, and patients are open to their help. A qualitative study through semistructured interviews was conducted. Participants were recruited using purposive sampling of a cross section of 20 palliative care nurses. Questions focused on their experience and review of existential/spiritual interventions in general and a published intervention Outlook. Their responses were transcribed and subjected to thematic analysis. The nurses' responses yielded both a range of experiences with existential/spiritual interventions and a review of Outlook: The review of Outlook identified a further 6 subthemes, including (1) Outlook can provide a framework, (2) session II difficult but valuable, (3) benefit for the bereaved, (4) benefit for the nurse/health care team, (5) potential difficulties in delivering Outlook, and (6) possible modifications. Australian palliative care nurses have limited experience with published existential/spiritual interventions, but many are already including elements of these in their practice, and most welcomed the validated tool. Identified needs included training, experience, dedicated space, and time. [ABSTRACT FROM AUTHOR]

Abstract: Follow-up care after breast cancer treatment is becoming more complex as it attempts to address the long-term needs of an increasing number of survivors. Workforce issues in oncology challenge the sustainability of current specialist-based care. This study explores survivors’ experiences with follow-up care and attitudes to alternative models including a tailored survivorship care plan and involvement of primary care physicians and breast care nurses. Twenty women across Australia participated in semi-structured telephone interviews. All continued to attend follow-up visits with a specialist oncologist and reported a high level of satisfaction with care. Participants described a strong reliance on their specialist but were open to an increased role for their primary care physician in a shared model of care. Communication between multidisciplinary team members was perceived as an ongoing problem and there was enthusiasm for a patient-held written survivorship care plan to address this, and to meet information needs. [Copyright &y& Elsevier]

The article discusses the difficulties perceived by cancer specialists in consulting with patients and families based an Internet survey in Australia in 2008. It is noted that cancer specialists are at particular risk of burnout due to the nature of their work. The specialists surveyed included oncologists and palliative care specialists who were members of the Clinical Oncological Society of Australia. The survey identified the degree of difficulty perceived for various consultation tasks and the level of stress among specialists.

Background Patients and clinicians report difficulties with the process of informed consent to clinical trials and audiotape audits show that critical information is often omitted or poorly presented. Decision aids (DAs) may assist in improving consent. Aims This study piloted a DA booklet for a high priority breast cancer prevention trial, IBIS-II DCIS, which compares the efficacy of an aromatase inhibitor (anastrozole) with tamoxifen in women who have had surgery for ductal carcinoma in situ (DCIS). Method Thirty-one Australian women participating in the IBIS-I breast cancer prevention trial and who are currently in follow-up agreed to read the IBIS-II DCIS participant information sheet and the DCIS DA booklet, complete a set of standardized questionnaires, and provide feedback on the DA via a semi-structured phone interview. Results Women found the DA helpful in deciding about trial participation, reporting that it aided their understanding over and above the approved IBIS-II DCIS participant information sheet and was not anxiety provoking. Women’s understanding of the rationale and methods of clinical trials and the IBIS-II DCIS trial was very good; with more than 80% of items answered correctly. The only areas that were not understood well were the concepts of randomization and blinding. Conclusions This study suggests that the DA will be acceptable to and valued by potential participants in the IBIS-II DCIS study. The revised DA is currently being evaluated prospectively in a randomized controlled trial. If successful, such DAs could transform the consent process to large clinical trials and may also reduce dropout rates. [ABSTRACT FROM AUTHOR]

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This study aims to describe psychological adjustment in a sample of Australian women at increased risk for hereditary breast cancer and to assess the sociodemographic, personality and appraisal factors which contribute to psychological distress. Psychological adjustment of 355 unaffected women at increased risk of developing hereditary breast cancer who approached familial cancer clinics for advice about their breast cancer risk was assessed in a cross-sectional design, using validated measures of psychological distress. Eight per cent of women showed presence of a significant stress response in relation to being at risk of developing breast cancer. In multiple regression, state anxiety and breast cancer anxiety were both highly correlated with overestimating one's breast cancer risk and having experienced a breast cancer-related event in the family in the past year. State anxiety was strongly associated with a tendency to monitor for threatening information (t = 3.41, p = 0.001), and breast cancer anxiety was correlated with having had a relative die from breast cancer (t = 1.49, p = 0.006). Results suggest that women who have experienced a recent breast cancerrelated event in the family and those who have exaggerated risk perceptions are most likely to have high levels of psychological distress. Thus women are likely to benefit from supportive counselling and attempts at correcting inflated risk perceptions. A small group of women was identified who showed a significant stress response to being at risk of developing breast cancer. For these women clear pathways of referral for psychological or psychiatric assistance need to be accessible. [ABSTRACT FROM AUTHOR]

Background Neoadjuvant systemic therapy ( NAST) has become an established treatment option for women with operable breast cancer. Aim We aimed to better understand NAST treatment patterns, barriers and facilitators in Australia and New Zealand. Methods We undertook a cross-sectional survey of the current clinical practice of Australian and New Zealand breast cancer specialists. Questions included referral patterns for NAST, patient selection, logistics, decision making and barriers. Results Of 207 respondents, 162 (78%) reported routinely offering NAST to selected patients with operable breast cancer (median 9% of patients offered NAST). Specialty, location, practice type, gender or years of experience did not predict for offering NAST. In all, 45 and 58% wanted to increase the number of patients who receive NAST in routine care and in clinical trials respectively. Facilitators included the multidisciplinary team meeting and access to NAST clinical trials. Specialist-reported patient barriers included: patient desire for immediate surgery (63% rated as important/very important); lack of awareness of NAST (50%); concern about progression (43%) and disinterest in downstaging (32%). Forty-three per cent of participants experienced system-related barriers to the use of NAST, including other clinicians' lack of interest (27%); lack of clinical trials (24%) and unacceptable wait for a medical oncology appointment (37%). Conclusion This group of Australian and New Zealand clinicians are interested in NAST for operable breast cancer in routine care and clinical trials. Patient- and system-related barriers that prevent the optimal uptake of this treatment approach will need to be systematically addressed if NAST is to become a more common approach. [ABSTRACT FROM AUTHOR]

Objectives: Paramedics have the potential to make a substantial contribution to community-based palliative care provision. However, they are hindered by a lack of policy and institutional support, as well as targeted education and training. This study aimed to elicit paramedics', palliative care doctors' and nurses', general practitioners', residential aged care nurses' and bereaved families and carers' attitudes and perspectives on how palliative paramedicine can be improved to better suit the needs of community-based patients, their families and carers, and the clinicians involved in delivering the care., Design: In this qualitative study underpinned by a social constructivist epistemology, semistructured interviews were conducted., Setting and Participants: 50 participants with palliative paramedicine experience, from all jurisdictions of Australia. Participants were interviewed between November 2021 and April 2022., Results: All participants suggested paramedics play an important adjunct role in the provision of palliative and end-of-life care in home-based settings. Three levels of opportunities for improvement were identified: macrolevel (policy and frameworks; funding and education; accessing medical records and a widening scope); mesolevel (service-level training; interprofessional understanding and communities of practice and community expectations) and microlevel (palliative care subspecialty; debriefing and self-care and partnering with families)., Conclusion: To enhance paramedic capacity to provide palliative care support, improvements targeting systems, services, communities and individuals should be made. This calls for stronger inclusion of paramedicine in interdisciplinary palliative care and greater investment in both the generalist and specialist palliative paramedicine workforce., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2024. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Objective: We aimed to explore the supportive care needs of ovarian cancer patients and their caregivers before and after the first cancer recurrence, the top unmet needs after recurrence, and the relationship between patient and caregiver needs at recurrence., Methods: Participants were 288 patients and 140 caregivers from the Australian Ovarian Cancer Study-Quality of Life (AOCS-QoL) cohort. They completed Supportive Care Needs Surveys (patients: SCNS-SF34, caregivers: SCNS-P&C44) every three-to-six months for up to two years. Linear mixed models tracked changes in needs over time. We calculated the percentage reporting moderate-to-high needs after recurrence. LASSO regression analysed patient-caregiver need relationships., Results: Both patients' and caregivers' psychological, health system/service and information needs increased with recurrence along with patients' support and physical needs. These remained stable at nine months after recurrence. Dominant patient needs post-recurrence included 'fear of recurrence' (38%) and 'concerns about the worries of those close' (34%), while caregivers expressed 'concerns about recurrence' (41%) and 'recovery of the patient not turning out as expected' (31%). Among dyads, when patients had 'fears about the cancer spreading' this was associated with caregivers having a need for help with 'reducing stress in the patients' life'; when caregivers had concerns about 'recurrence' this was associated with patients needing help with 'uncertainty about the future' and 'information about things they can do to help themselves'., Conclusions: Recurrent ovarian cancer intensifies disease-related fears and concerns for patients and loved ones. Addressing dyadic concerns through supportive care interventions may enhance cohesion during the challenging journey of recurrent disease., Competing Interests: Declaration of competing interest The authors have no relevant financial or non-financial interests to disclose., (Copyright © 2024 The Authors. Published by Elsevier Inc. All rights reserved.)

Objective: Fear of cancer recurrence (FCR) is highly prevalent, however there is no formal training for clinicians to address FCR. A novel brief clinician intervention to help patients manage FCR (Clinician Intervention to Reduce Fear of Recurrence (CIFeR)) was shown to be feasible, acceptable, and reduced FCR in breast cancer patients in a pilot study. We now aim to explore the barriers and facilitators of implementing CIFeR within routine oncology practice in Australia., Methods: This multicentre, single-arm Phase I/II implementation study recruited surgical, medical and radiation oncologists who treat women with early breast cancer. Participating clinicians completed online CIFeR training and were asked to use CIFeR for the next 6 months. Questionnaires were administered before (T0), immediately after (T1), then 3 (T2) and 6 months (T3) after training to assess confidence in addressing FCR and Proctor Implementation outcomes. The primary outcome was adoption at T2. Secondary outcomes were self-efficacy in FCR management, acceptability, feasibility, costs, barriers and facilitators of implementation., Results: Fifty-two clinicians consented of whom 37 completed the CIFeR intervention training. Median age of participants was 41.5 (range 29-61), 73% were female and 51% were medical oncologists. The primary endpoint was met, with CIFeR adopted by 82%. Clinician intervention delivery took 7.4 min on average and was deemed acceptable, appropriate and feasible. Self-efficacy in managing FCR improved significantly across all domains (p < 0.001). Lack of time was the greatest barrier to routine CIFeR&#95;2 implementation., Conclusions: A structured brief, low-cost clinician intervention to reduce FCR is useful, acceptable and improved self-efficacy with FCR management. Fear of cancer recurrence training should be incorporated into communication skills training of oncologists and surgeons., Trial Registration: Prospectively registered with the Australian New Zealand Clinical Trials Registry, ACTRN12621001697875., Trial Sponsor: Chris O'Brien Lifehouse., (© 2023 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.)

Background: Pain is a common, debilitating, and feared symptom, including among cancer survivors. However, large-scale population-based evidence on pain and its impact in cancer survivors is limited. We quantified the prevalence of pain in community-dwelling people with and without cancer, and its relation to physical functioning, psychological distress, and quality of life (QoL)., Methods: Questionnaire data from participants in the 45 and Up Study (Wave 2, n = 122,398, 2012-2015, mean age = 60.8 years), an Australian population-based cohort study, were linked to cancer registration data to ascertain prior cancer diagnoses. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for bodily pain and pain sufficient to interfere with daily activities (high-impact pain) in people with versus without cancer, for 13 cancer types, overall and according to clinical, personal, and health characteristics. The relation of high-impact pain to physical and mental health outcomes was quantified in people with and without cancer., Results: Overall, 34.9% (5,436/15,570) of cancer survivors and 31.3% (32,471/103,604) of participants without cancer reported bodily pain (PR = 1.07 [95% CI = 1.05-1.10]), and 15.9% (2,468/15,550) versus 13.1% (13,573/103,623), respectively, reported high-impact pain (PR = 1.13 [1.09-1.18]). Pain was greater with more recent cancer diagnosis, more advanced disease, and recent cancer treatment. High-impact pain varied by cancer type; compared to cancer-free participants, PRs were: 2.23 (1.71-2.90) for multiple myeloma; 1.87 (1.53-2.29) for lung cancer; 1.06 (0.98-1.16) for breast cancer; 1.05 (0.94-1.17) for colorectal cancer; 1.04 (0.96-1.13) for prostate cancer; and 1.02 (0.92-1.12) for melanoma. Regardless of cancer diagnosis, high-impact pain was strongly related to impaired physical functioning, psychological distress, and reduced QoL., Conclusions: Pain is common, interfering with daily life in around one-in-eight older community-dwelling participants. Pain was elevated overall in cancer survivors, particularly for certain cancer types, around diagnosis and treatment, and with advanced disease. However, pain was comparable to population levels for many common cancers, including breast, prostate and colorectal cancer, and melanoma., (© 2023. BioMed Central Ltd., part of Springer Nature.)

Background: Fear of cancer recurrence (FCR) affects 50-70% of cancer survivors with 30% reporting an unmet need for help with managing FCR. Patients indicate desire to discuss FCR with clinicians, however clinicians indicate discomfort with managing FCR and no formal educational interventions on how to discuss FCR or worry exists for oncology clinicians. Our team developed a novel clinician-driven brief education intervention to help patients manage FCR (the Clinician Intervention to Reduce Fear of Recurrence (CIFeR) intervention). In earlier work, we demonstrated the feasibility, acceptability, and efficacy of CIFeR in reducing FCR in breast cancer patients. We now aim to explore the barriers and facilitators to implementing this low-cost brief intervention within routine oncology practice in Australia. The primary objective is to assess the adoption of CIFeR in routine clinical practice. Secondary objectives are to identify the uptake and sustainability, perceived acceptability, feasibility, costs, barriers and facilitators of implementation of CIFeR in routine clinical practice, and to assess whether training in CIFeR increases clinicians' self-efficacy in managing FCR with their patients., Methods: This multicentre, single-arm Phase I/II implementation study will recruit medical and radiation oncologists and oncology surgeons who treat women with early breast cancer. Participants will complete online CIFeR training. They will then be asked to use CIFeR with suitable patients for the next 6 months. Participants will complete questionnaires prior to, immediately after and 3 and 6 months after training to assess confidence addressing FCR, and 3 and 6 months after training to assess Proctor Implementation outcomes. At 6 months, they will also be asked to participate in a semi-structured telephone interview to elicit their feedback about barriers and facilitators to using CIFeR in routine clinical practice., Discussion: This study will provide further data to support the routine use of an evidence-based, clinician-lead educational intervention to reduce FCR in breast cancer patients. Additionally, this study will identify any barriers and facilitators to implementing the CIFeR intervention in routine care and evidence for integration of FCR training into oncology communication skills education., Trial Registration: Prospectively registered with the Australian New Zealand Clinical Trials Registry, ACTRN12621001697875., Trial Sponsor: Chris O'Brien Lifehouse., Protocol Version: 2.6, Dated 28th February 2023., (© 2023. The Author(s).)

Aim: Little is known about the attitudes of Australian patients with a history of breast cancer toward the reuse of administrative health data and clinical trial data. Issues of consent, privacy, and information security are key to the discussion. Cancer care and research provides an opportune setting to develop an understanding of attitudes toward data sharing and reuse in individuals with a history of breast cancer., Methods: An anonymous, online questionnaire for individuals with a history or diagnosis of breast cancer was distributed by two peak bodies (Breast Cancer Trials [BCT] and Breast Cancer Network of Australia [BCNA]) to their memberships between July 14, 2020 and October 17, 2020. Results were captured in RedCap; data analysis was undertaken using Stata, and a thematic analysis of free text responses was undertaken using NVivo., Results: One hundred and thirty-two complete responses were received. Twenty-three percent of respondents had participated in a clinical trial, and 12% were currently receiving treatment (chemotherapy, radiotherapy, surgery, or endocrine). Respondents were supportive of the secondary use of de-identified administrative health data and clinical trial data, but showed concern about data security and privacy. Respondents emphasized that the reuse of data should be for improved societal health outcomes, not profit. Many assumed secondary analysis was already undertaken on de-identified administrative health data and clinical trial data., Conclusions: Respondents were supportive of the secondary use of de-identified administrative health and clinal trial data within the established bounds of good clinical practice and ethical oversight., (© 2022 John Wiley & Sons Australia, Ltd.)

Purpose: Qualitative research examining healthcare experiences and needs of people with advanced (metastatic or recurrent) colorectal cancer CRC-A is limited. This study aimed to fill this gap in CRC-A survivors treated with surgical or palliative chemotherapy, through a qualitative study., Method: Australian adults treated for CRC-A were recruited 0.5-2 years post-surgery or post-diagnosis of CRC-A (for palliative chemotherapy groups). Semi-structured telephone interviews, analysed via framework analysis, explored healthcare experiences. Demographic, clinical, and quality of life data characterised the sample and informed framework analyses. Data was compared against the Institute of Medicine's framework for quality healthcare., Results: Interviews from 38 participants (22 female) of median age 59 years (range 27-84) revealed six overarching themes relating to the safety, effectiveness, timeliness, patient-centredness, efficiency, and equity of CRC-A care: 1) Early experiences influence later perceptions; 2) Trusting the system, trusting the professionals; 3) The benefits of multidisciplinary care co-ordination; 4) Feeling lost in follow-up; 5) Whose role is it anyway? Gaps in responsibility for survivorship care; and 6) Useful or useless? Perceptions of psychosocial support., Conclusions: Healthcare systems for CRC-A can be improved through delivery of repeated information, upskilling general practitioners and/or implementing written survivorship care plans or survivorship clinics, to ensure quality healthcare., Competing Interests: Declarations of competing interest None declared., (Copyright © 2023 Elsevier Ltd. All rights reserved.)

Aim: The risk of dying from COVID-19 is higher for those who are older, immune-compromised, or chronically ill. Vaccines are an effective strategy in reducing mortality and morbidity from COVID-19. However, for COVID-19 vaccination programs to reach full potential, vaccines must be taken up by those at greatest risk, such as cancer patients. Understanding the perspectives of all stakeholders involved in cancer patient COVID-19 vaccine uptake will be critical to ensuring appropriate support, and information is provided to facilitate vaccination. The aim of this research was to explore the longitudinal views of cancer stakeholders regarding COVID-19 vaccination., Methods: Semistructured interviews were conducted with cancer patients (n = 23), family members (n = 10), cancer health professionals (n = 19), and representatives of cancer nongovernment organizations (n = 7) across Australia 6 and 12 months postrecruitment. Transcripts were thematically analyzed, using an inductive approach., Results: All stakeholder groups expressed mostly positive attitudes toward COVID-19 vaccination, with the following key themes identified: (1) high motivation-vaccination perceived as offering health protection and hope; (2) hesitancy-concern about vaccine hesitancy among the general population, with a minority hesitant themselves; (3) confusion and frustration-regarding the vaccine rollout and patient eligibility; (4) uncertainty-about vaccination in the context of cancer; (5) access to vaccination; and (6) desire for expert individualized advice-on vaccine interaction with cancer treatments., Conclusion: These findings highlight the COVID-19 vaccine concerns and information needs of cancer stakeholders. Policymakers need to provide clear tailored information regarding vaccine eligibility, accessibility, benefits, and risks to facilitate vaccine uptake., (© 2022 The Authors. Asia-Pacific Journal of Clinical Oncology published by John Wiley & Sons Australia, Ltd.)

Background: Women living with metastatic breast cancer (MBC) are at risk of significantly impaired quality of life (QOL), symptom burden, distress and fear of progression, and unmet needs, yet they face barriers to accessing evidence-based psychosocial treatments. Our group therefore developed Finding My Way-Advanced (FMW-A), a web-based self-guided psychosocial program for women with MBC. This study aims to assess its efficacy in improving mental and other QOL domains, distress, fear of progression, unmet needs, and health service utilisation., Methods: The multi-site randomised controlled trial (RCT) will enrol 370 Australian participants. Eligible participants are adult (18 years +) women diagnosed with MBC, with a life expectancy of 6 months or more, with sufficient English-language literacy to provide informed consent. Participants will be identified, screened and referred from one of 10 Australian sites, or via self-referral in response to advertisements. Participants complete four online questionnaires: prior to accessing their program ('baseline'), 6 weeks later ('post-intervention'), then 3 months and 6 months post-intervention. Consenting participants will be randomised to either FMW-A (intervention), or Breast Cancer Network Australia's (BCNA) online/app resource My Journey (minimal intervention attention-control). This is a single-blind study, with randomisation computer-generated and stratified by site. FMW-A is a 6-module program addressing some of the most common issues experienced by women with MBC, with BCNA control resources integrated within the 'resources' section. All modules are immediately accessible, with an additional booster module released 10 weeks later. The primary outcome is mental QOL; statistical criteria for superiority is defined as a 4-point difference between groups at post-treatment. Secondary outcomes include other QOL domains, distress, fear of progression, health service use, intervention adherence, and user satisfaction., Discussion: This will be the first adequately powered RCT of a self-directed online intervention for women with MBC. If efficacious, FMW-A will help address two national key priorities for management of MBC - enhancing QOL and reducing symptom burden. FMW-A has the potential to address unmet needs and overcome access barriers for this overlooked population, while reducing health system burden., Trial Registration: The study was registered prospectively with the ANZCTR on 29/10/2021. Trial ID ACTRN12621001482853p.  https://anzctr.org.au/Trial/Registration/TrialReview.aspx?id=382714&isReview=true., (© 2022. The Author(s).)

Objective: Cancer patients, carers and oncology health professionals have been impacted by the COVID-19 pandemic in many ways, but their experiences and psychosocial responses to the pandemic are still being explored. This study aimed to document the experience of Australians living with cancer, family carers, and Oncology health professionals (HPs) when COVID-19 first emerged., Methods: In this qualitative study, participants (cancer patients currently receiving treatment, family carers and HPs) completed a semi-structured interview exploring their experiences of COVID-19 and the impact it had on cancer care. Participants also completed the Hospital Anxiety and Depression Scale (patients) and the Depression, Anxiety and Stress Scale (carers and HPs) to assess emotional morbidity. Thematic analysis was undertaken on qualitative data., Results: 32 patients, 16 carers and 29 HPs participated. Qualitative analysis yielded three shared themes: fear and death anxiety, isolation, and uncertainty. For HPs, uncertainty incorporated the potential for moral distress and work-stress. Patients and carers scoring high on anxiety/depression measures were more likely to have advanced disease, expressed greater death anxiety, talked about taking more extreme precautionary measures, and felt more impacted by isolation., Conclusion: Cancer and COVID-19 can have compounding psychological impacts on all those receiving or giving care., Practice Implications: Screening for distress in patients, and burnout in HPs, is recommended. Increased compassionate access and provision of creative alternatives to face-to-face support are warrented., (Copyright © 2022 Elsevier B.V. All rights reserved.)

Purpose: Radiation oncologists need to have more than sound clinical and technical competencies. To optimize care for patients and advance all aspects of radiation oncology (RO), radiation oncologists must also be effective leaders. Embedding systematic leadership education into RO training programs is challenging. This study examined RO residents' perspectives and preferences relating to leadership education. Such data inform the integration of universal leadership learning into RO training in Australia and New Zealand and identify priority areas to facilitate successful leadership development initiatives in RO training programs worldwide., Methods and Materials: Semistructured telephone interviews were conducted with 13 RO residents across 8 Australian training departments and all stages of training. Data from transcriptions of taped interviews were coded by at least 2 researchers and collected to saturation. Qualitative thematic analysis was conducted using an iterative inductive process to develop codes into themes and subthemes. Representative quotes were collated to illustrate subthemes., Results: Four key themes related to leadership education were identified and labeled as follows: (1) recognition, credibility, and value of education; (2) logistics of formal learning; (3) real-world opportunities ("seeing and doing"); and (4) one size does not fit all. Residents unanimously reported that formal leadership education was important and that aspects of becoming a good leader could be learned. Organizational and cultural factors emerged as either barriers or facilitators to learning. There was strong support for interactive methods of learning, and role-modeling by senior colleagues was identified as having a major effect on junior learners., Conclusions: This study offers insight into RO residents' perspectives of and preferences for their own leadership development. The findings have practical implications for the design of effective RO leadership programs and bring the RO field one step closer to the ultimate goal of enhancing leadership capability for all RO professionals., (Copyright © 2021 Elsevier Inc. All rights reserved.)

Purpose: To quantify the relationship of cancer diagnosis to workforce participation in Australia, according to cancer type, clinical features and personal characteristics., Methods: Questionnaire data (2006-2009) from participants aged 45-64 years (n=163,556) from the population-based 45 and Up Study (n=267,153) in New South Wales, Australia, were linked to cancer registrations to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for non-participation in the paid workforce-in participants with cancer (n=8,333) versus without (n=155,223), for 13 cancer types., Results: Overall, 42% of cancer survivors and 29% of people without cancer were out of the workforce (PR=1.18; 95%CI=1.15-1.21). Workforce non-participation varied substantively by cancer type, being greatest for multiple myeloma (1.83; 1.53-2.18), oesophageal (1.70; 1.13-2.58) and lung cancer (1.68; 1.45-1.93) and moderate for colorectal (1.23; 1.15-1.33), breast (1.11; 1.06-1.16) and prostate cancer (1.06; 0.99-1.13). Long-term survivors, 5 or more years post-diagnosis, had 12% (7-16%) greater non-participation than people without cancer, and non-participation was greater with recent diagnosis, treatment or advanced stage. Physical disability contributed substantively to reduced workforce participation, regardless of cancer diagnosis., Conclusions: Cancer survivors aged 45-64 continue to participate in the workforce. However, participation is lower than in people without cancer, varying by cancer type, and is reduced particularly around the time of diagnosis and treatment and with advanced disease., Implications for Cancer Survivors: While many cancer survivors continue with paid work, participation is reduced. Workforce retention support should be tailored to survivor preferences, cancer type and cancer journey stage., (© 2021. The Author(s).)

Genomic Sequencing (GS) to identify high cancer risk will soon enter clinical practice at significant cost to the health system. This study aimed to quantify perceived value of GS to Australian cancer patients and their first-degree relatives participating in a genomic sequencing study, and factors associated with value. Participants were recruited upon consent to the genomics study. Eligible participants (with cancer of likely genetic etiology, or a first-degree relative) completed a questionnaire prior to GS. Willingness to pay was assessed via hypothetical trade-off scenarios of actionable result return rates of 1%, 10%, 20%, 30%, 40% or 50%. Of 348 probands and 213 relatives (92% and 93% response rate), 81% would consistently have GS for as little as a 1% actionable return rate. Participants would pay a median of $1,000 for return rates of at least 20% (probands) or 30% (relatives), and $300 for lower return rates. Probands with common cancers and negative attitudes to uncertainty were more likely to have GS; those with higher education were more willing to pay $1,000 and $3,000 for lower return rates. This study found high interest in, but lower willingness to pay for GS in cancer patients and their first-degree relatives, possibly due to inability to pay. Further research is needed to improve our understanding of how individuals in different risk circumstances, trade-off the risks, harms, and benefits of GS., (© 2021 National Society of Genetic Counselors.)

Objective: Given the stressful and emotional nature of cancer, challenging interactions between nurses, patients, and family frequently occur. Nurses are rarely equipped with strategies to avoid or de-escalate stressful situations with carers, which can include displays of conflict, anger, or dominance. A brief online education module (TRIO-Conflict) was developed to provide nurses with management strategies to use in situations of conflict. This study aimed to assess the feasibility, acceptability, and potential efficacy of TRIO-Conflict., Methods: Nurses were recruited through an Australian breast cancer organisation (McGrath Foundation). Participants completed pre/post module measures of attitudes towards carers, confidence in their skills to effectively navigate challenging interactions with carers, and applied knowledge of management strategies. Data were analysed using Wilcoxon signed-rank tests. Qualitative feedback was analysed using content analysis., Results: 52 nurses completed pre-/post- measures, with 4 semi-structured interviews conducted. Significant improvements in attitudes towards carers (p = .010) and confidence in one's own ability to manage challenging interactions with carers (p < .001) were found, but not knowledge of strategies. Most nurses found TRIO-Conflict very/extremely helpful (87%) and were satisfied with content (94%) and usability (93%)., Conclusion: TRIO-Conflict utilised evidence-based learning techniques (provision of example phrases, video vignettes, reflective exercises) to improve nurses attitudes and confidence., Practice Implications: TRIO-Conflict is a brief, targeted, clinically relevant, and easily accessible online training programme which could be widely disseminated to oncology nurses., (Copyright © 2021 Elsevier B.V. All rights reserved.)

Purpose: We evaluated the impact of personal melanoma genomic risk information on sun-related behaviors and psychological outcomes., Methods: In this parallel group, open, randomized controlled trial, 1,025 Australians of European ancestry without melanoma and aged 18-69 years were recruited via the Medicare database (3% consent). Participants were randomized to the intervention (n = 513; saliva sample for genetic testing, personalized melanoma risk booklet based on a 40-variant polygenic risk score, telephone-based genetic counseling, educational booklet) or control (n = 512; educational booklet). Wrist-worn ultraviolet (UV) radiation dosimeters (10-day wear) and questionnaires were administered at baseline, 1 month postintervention, and 12 months postbaseline., Results: At 12 months, 948 (92%) participants completed dosimetry and 973 (95%) the questionnaire. For the primary outcome, there was no effect of the genomic risk intervention on objectively measured UV exposure at 12 months, irrespective of traditional risk factors. For secondary outcomes at 12 months, the intervention reduced sunburns (risk ratio: 0.72, 95% confidence interval: 0.54-0.96), and increased skin examinations among women. Melanoma-related worry was reduced. There was no overall impact on general psychological distress., Conclusion: Personalized genomic risk information did not influence sun exposure patterns but did improve some skin cancer prevention and early detection behaviors, suggesting it may be useful for precision prevention. There was no evidence of psychological harm., (© 2021. The Author(s).)

Background: Clinical pathways (CPs) can improve health outcomes, but to be sustainable, must be deemed acceptable and appropriate by staff. A CP for screening and management of anxiety and depression in cancer patients (the ADAPT CP) was implemented in 12 Australian oncology services for 12 months, within a cluster randomised controlled trial of core versus enhanced implementation strategies. This paper compares staff-perceived acceptability and appropriateness of the ADAPT CP across study arms., Methods: Multi-disciplinary lead teams at each service tailored, planned, championed and implemented the CP. Staff at participating services, purposively selected for diversity, completed a survey and participated in an interview prior to implementation (T0), and at midpoint (6 months: T1) and end (12 months: T2) of implementation. Interviews were recorded, transcribed and thematically analysed., Results: Seven metropolitan and 5 regional services participated. Questionnaires were completed by 106, 58 and 57 staff at T0, T1 and T2 respectively. Eighty-eight staff consented to be interviewed at T0, with 89 and 76 at T1 and T2 (response rates 70%, 66% and 57%, respectively). Acceptability/appropriateness, on the quantitative measure, was high at T0 (mean of 31/35) and remained at that level throughout the study, with no differences between staff from core versus enhanced services. Perceived burden was relatively low (mean of 11/20) with no change over time. Lowest scores and greatest variability pertained to perceived impact on workload, time and cost. Four major themes were identified: 1) Mental health is an important issue which ADAPT addresses; 2) ADAPT helps staff deliver best care, and reduces staff stress; 3) ADAPT is fit for purpose, for both cancer care services and patients; 4) ADAPT: a catalyst for change. Opposing viewpoints are outlined., Conclusions: This study demonstrated high staff-perceived acceptability and appropriateness of the ADAPT CP with regards to its focus, evidence-base, utility to staff and patients, and ability to create change. However, concerns remained regarding burden on staff and time commitment. Strategies from a policy and managerial level will likely be required to overcome the latter issues., Trial Registration: The study was registered prospectively with the ANZCTR on 22/3/2017. Trial ID ACTRN12617000411347. https://www.anzctr.org.au/ ., (© 2021. The Author(s).)

Objective: Informal family caregivers play a crucial role in cancer care. Effective caregiver involvement in cancer care can improve both patient and caregiver outcomes. Despite this, interventions improving the caregiver involvement are sparse. This protocol describes a randomised controlled trial evaluating the combined effectiveness of novel online caregiver communication education modules for: (1) oncology clinicians ( eTRIO ) and (2) patients with cancer and caregivers ( eTRIO-pc )., Methods and Analysis: Thirty medical/radiation/surgical oncology or haematology doctors and nurses will be randomly allocated to either intervention ( eTRIO ) or control (an Australian State Government Health website on caregivers) education conditions. Following completion of education, each clinician will recruit nine patient-caregiver pairs, who will be allocated to the same condition as their recruiting clinician. Eligibility includes any new adult patient diagnosed with any type/stage cancer attending consultations with a caregiver. Approximately 270 patient-caregiver pairs will be recruited. The primary outcome is caregiver self-efficacy in triadic (clinician-patient-caregiver) communication. Patient and clinician self-efficacy in triadic communication are secondary outcomes. Additional secondary outcomes for clinicians include preferences for caregiver involvement, perceived module usability/acceptability, analysis of module use, satisfaction with the module, knowledge of strategies and feedback interviews. Secondary outcomes for caregivers and patients include preferences for caregiver involvement, satisfaction with clinician communication, distress, quality of life, healthcare expenditure, perceived module usability/acceptability and analysis of module use. A subset of patients and caregivers will complete feedback interviews. Secondary outcomes for caregivers include preparedness for caregiving, patient-caregiver communication and caring experience. Assessments will be conducted at baseline, and 1 week, 12 weeks and 26 weeks post-intervention., Ethics and Dissemination: Ethical approval has been received by the Sydney Local Health District Human Research Ethics Committee (REGIS project ID number: 2019/PID09787), with site-specific approval from each recruitment site. Protocol V.7 (dated 1 September 2020) is currently approved and reported in this manuscript. Findings will be disseminated via presentations and peer-reviewed publications. Engagement with clinicians, media, government, consumers and peak cancer groups will facilitate widespread dissemination and long-term availability of the educational modules., Trial Registration Number: ACTRN12619001507178., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Improved survival means that cancer is increasingly becoming a chronic disease. Understanding and improving functional outcomes are critical to optimising survivorship. We quantified physical and mental health-related outcomes in people with versus without cancer, according to cancer type., Methods: Questionnaire data from an Australian population-based cohort study (45 and Up Study (n = 267,153)) were linked to cancer registration data to ascertain cancer diagnoses up to enrolment. Modified Poisson regression estimated age- and sex-adjusted prevalence ratios (PRs) for adverse person-centred outcomes-severe physical functional limitations (disability), moderate/high psychological distress and fair/poor quality of life (QoL)-in participants with versus without cancer, for 13 cancer types., Results: Compared to participants without cancer (n = 244,000), cancer survivors (n = 22,505) had greater disability (20.6% versus 12.6%, respectively, PR = 1.28, 95%CI = (1.25-1.32)), psychological (22.2% versus 23.5%, 1.05 (1.02-1.08)) and poor/fair QoL (15.2% versus 10.2%; 1.28 (1.24-1.32)). The outcomes varied by cancer type, being worse for multiple myeloma (PRs versus participants without cancer for disability 3.10, 2.56-3.77; distress 1.53, 1.20-1.96; poor/fair QoL 2.40, 1.87-3.07), lung cancer (disability 2.81, 2.50-3.15; distress 1.67, 1.46-1.92; poor/fair QoL 2.53, 2.21-2.91) and non-Hodgkin's lymphoma (disability 1.56, 1.37-1.78; distress 1.20, 1.05-1.36; poor/fair QoL 1.66, 1.44-1.92) and closer to those in people without cancer for breast cancer (disability 1.23, 1.16-1.32; distress 0.95, 0.90-1.01; poor/fair QoL 1.15, 1.05-1.25), prostate cancer (disability 1.11, 1.04-1.19; distress 1.09, 1.02-1.15; poor/fair QoL 1.15, 1.08-1.23) and melanoma (disability 1.02, 0.94-1.10; distress 0.96, 0.89-1.03; poor/fair QoL 0.92, 0.83-1.01). Outcomes were worse with recent diagnosis and treatment and advanced stage. Physical disability in cancer survivors was greater in all population subgroups examined and was a major contributor to adverse distress and QoL outcomes., Conclusions: Physical disability, distress and reduced QoL are common after cancer and vary according to cancer type suggesting priority areas for research, and care and support.

Background/aims: This study compared rates of clinical trial participation and perceived adequacy of information provided prior to consent in migrant and Australian-born cancer patients, and explored factors associated with being approached and agreeing to participate., Methods: We utilized data from a larger cross-sectional survey assessing disparities in patient-reported outcomes in Chinese, Arabic, or Greek migrant versus English-speaking Australian-born cancer patients. Participants completed a questionnaire eliciting demographic and disease details, communication challenges, whether invited and consented to a clinical trial, and if so, adequacy of information received., Results: A total of 566 migrants (142 Arabic, 251 Chinese, and 173 Greek) and 270 English-speaking Australian-born patients participated. Overall, 25% were approached to participate in clinical trials, and of these, 74% consented. Migrants were significantly less likely to consent if asked to participate in clinical trials (P = .009), and fewer migrants (67.2%) reported receiving sufficient information prior to deciding on trial participation (82.1%; P = .04). Perceived understanding of the health system (odds ratio [OR] = 0.71), confidence in speaking (OR = 0.75), ability to understand English (OR = 0.80), and communicate with doctors in English (OR = 0.81) were significantly related to patients' likelihood of being approached to participate in clinical trials. Perceived understanding of the health system (OR = 0.66) was significantly associated with patients agreeing to take part in cancer clinical trials., Conclusions: Our findings identified that barriers to migrants' self-reported participation in clinical trials include perceived lack of understanding of the health system and low English proficiency. Strategies that address these barriers are needed to increase migrant patients' participation in cancer clinical trials., (© 2020 John Wiley & Sons Australia, Ltd.)

Background: People with melanoma want and need effective interventions for living with fear of cancer recurrence (FCR)., Objectives: This study reports the 12-month outcomes of a brief, psychological intervention designed to reduce FCR in people at high risk of developing another primary melanoma compared with usual care., Methods: In this two-arm randomized controlled trial, adults previously diagnosed with stage 0, I or II melanoma were randomly allocated to the intervention (n = 80) or control (usual care) arm (n = 84). The trial was registered with the Australian and New Zealand Clinical Trials Registry on 19 March 2013 (registration: ACTRN12613000304730). The intervention comprised a 76-page psychoeducational resource and three individually tailored, telephone-based sessions with a psychologist, scheduled at specific time points around participants' dermatological appointments. The primary outcome was the level of self-reported fear of new or recurrent melanoma assessed at 12 months postintervention using the severity subscale of the Fear of Cancer Recurrence Inventory., Results: Compared with the control arm, the intervention group reported significantly lower FCR at 12 months postintervention; the between-group mean difference was -1·41 for FCR severity [95% confidence interval (CI) -2·6 to -0·2; P = 0·02] and -1·32 for FCR triggers (95% CI -2·6 to -0·02; P = 0·04). The odds ratio for FCR severity scores ≥13 (54% intervention, 63% control) was 0·59 (95% CI 0·30-1·14, P = 0·12). There were no differences between groups in secondary outcomes, such as anxiety, depression or health-related quality of life., Conclusions: The previously reported 6-month benefits of this brief, patient-centred psychological intervention in reducing FCR were found to continue 12 months postintervention, with no known adverse effects, supporting implementation as part of routine melanoma care., (© 2019 British Association of Dermatologists.)

Introduction: Consent to biobanking remains controversial, with little empirical data to guide policy and practice. This study aimed to explore the attitudes, motivations, and concerns of both oncology patients and health care professionals (HCPs) regarding biobanking., Materials and Methods: Qualitative interviews were conducted with oncology patients and HCPs purposively selected from five Australian hospitals. Patients were invited to give biobanking consent as part of a clinical trial and/or for future research were eligible. HCPs were eligible if involved in consenting patients to biobanking or to donate specimens to clinical trials., Results: Twenty-two patients participated, with head and neck (36%) and prostate (18%) the most common cancer diagnoses; all had consented to biobanking. Twenty-two HCPs participated, from across eight cancer streams and five disciplines. Themes identified were (a) biobanking is a "no brainer"; (b) altruism or scientific enquiry; (c) trust in clinicians, science, and institutions; (d) no consent-just do it; (e) respecting patient choice ("opt-out"); (f) respectful timing of the request; (g) need for emotional/family support; (h) context of the biobanking request matters; and (i) factors for biobanking success., Discussion: These findings reinforced previous findings regarding high public trust in, and support for, biobanking. An initial opt-in consent approach with the option of later opt-out was favored by patients to respect and recognize donor generosity, whereas HCPs preferred an upfront opt-out model. Factors impacting biobanking success included the context of the request for use in a trial or specific research question, pre-existing patient and HCP rapport, a local institution champion, and infrastructure., Implications for Practice: Patients and health care professionals (HCPs) who experienced cancer biobanking consent were overwhelmingly supportive of biobanking. The motivations and approaches to seeking consent were largely mirrored between the groups. The findings of this study support the opt-in model of biobanking favored by patients; however, HCPs preferred an opt-out model. Both groups recognize the importance of making the request for biobanking at an appropriate time, preferably with emotional or family support, and respecting the timing of the request and privacy of the patient. Biobanking success can be promoted by hospital departments with a research focus by identifying an institutional biobanking champion and ensuring local infrastructure is available., Competing Interests: Disclosures of potential conflicts of interest may be found at the end of this article., (© AlphaMed Press 2018.)

Objective: This study aimed to develop and assess the feasibility of an online communication skills training intervention to increase cultural competence amongst oncology nurses working with individuals from minority backgrounds., Methods: The intervention provided examples of communication strategies using vignette-based, professionally produced videos, developed through an iterative process with input from a large multidisciplinary team. Fifty-three oncology nurses completed all three questionnaires at baseline, within 2 weeks and then 3 months after accessing the programme., Results: The online intervention was well received by the majority of participants, and was endorsed as clearly presented, informative, relevant and useful by more than 90% of participants. Eighty-seven percent of participants reported increased confidence in communicating with patients via an interpreter, and 93% agreed that skills they gained would be useful in providing better patient care. Participants reported significant improvements in practice while interacting with people with limited English proficiency 2 weeks and 3 months after accessing the website (X 2  = 13.66, P < 0.001)., Conclusion: This online communication training programme can now be tested for its utility in improving patient care for oncology nurses working with patients from minority backgrounds.

Objectives: This study aimed to describe the levels of health literacy and experience of care coordination among Chinese migrant patients with cancer and their carers in Australia, and to examine factors associated with these., Methods: Patients' self-reported data were collected using the Health Literacy and Cancer Care Coordination questionnaires. We conducted multivariate linear regression analyses to investigate predictors of patients' health literacy and their care experience. Canonical correlation analysis was used to examine the relationship between patients' health literacy and their care experience., Results: A total of 68 patients and eight carers participated in the survey. Patients and carers reported similar levels of health literacy, with the lowest scores being in the "Having sufficient information to manage health" and "Navigating the health system" subscales. Gender (P = 0.026, partial η 2  = 0.281) and educational attainment (P = 0.015, partial η 2  = 0.250) had significant and large effects on patients' health literacy, after controlling for each other. Educational attainment showed a significant and medium association with patients' experience of cancer care coordination (P = 0.041, partial η 2  = 0.101). A large and positive correlation was found between patients' health literacy and experience of cancer care coordination (canonical correlation = 0.81)., Conclusions: Our findings reveal the health literacy and care coordination needs of Chinese migrant patients with cancer in Australia, especially those with lower educational attainment. Future efforts are necessary to enhance Chinese migrants' health literacy and establish an accessible and easy-to-navigate care environment., (© 2019 John Wiley & Sons, Ltd.)

Objectives: Chinese migrant cancer survivors and carers face multiple barriers to accessing quality cancer information and support. This study aimed to explore the challenges and unmet needs experienced by the Australian Chinese community affected by cancer, and understand the contexts that hindered optimal care for this community., Methods: Adult cancer survivors and carers, whose native language is Mandarin or Cantonese, were recruited through community cancer support organizations. Bilingual researchers conducted focus groups with participants in either Mandarin or Cantonese. Focus groups were audio-recorded, transcribed, translated into English and thematically analyzed using qualitative methods., Findings: 62 Chinese-speaking participants (34 cancer survivors and 28 carers) participated in one of the eight focus groups conducted. The three main themes were (1) unmet information and support needs (trust, wellness, and rights); (2) barriers compounding unmet needs (language, health literacy, culture); and (3) participants' recommendations regarding cancer information and support provision. Seven subthemes of unmet needs were also identified: Trust (e.g., communication barriers, health system barriers, comparison regarding the care received), wellness (e.g., cultural differences produce conflict on views about wellness, need for psychological, community, and spiritual support), and rights (e.g., low awareness of financial and legal assistance, other factors increasing or reducing vulnerability)., Conclusions: This study highlights the needs and provides new insights into the impact of language, culture and health literacy barriers on the unmet information and support needs of the Chinese community affected by cancer. The key findings will inform the development of culturally targeted information and support resources for this community.

Objective: Fear of cancer recurrence (FCR) is common, debilitating, and costly to the health system. While there has been a rising trajectory in FCR-related research, there remain many unanswered questions. A research agenda is required to clarify priorities and ensure that research dollars and effort are expended wisely. This study aimed to elicit research topics and priorities from clinical and academic experts in FCR., Methods: Phase 1 consisted of elicitation by survey of prioritised FCR research topics from 20 members of the Psycho-Oncology Co-operative Research Group (PoCoG) FCR special interest group, followed by a focus group discussion with 28 clinicians, researchers, and cancer survivors, at which survey results were presented and further reflection was encouraged. This resulted in 28 research topics that were then subjected to a Delphi process to establish consensus (phase 2)., Results: Thirty-one participants completed round 1 of the Delphi process and 23 round 2, after which satisfactory consensus was reached. Five broad areas of research were identified as priorities. In rank order, they were (1) intervention models; (2) definition, predictors, and outcomes of FCR; (3) detection and screening; (4) training for health professionals; and (5) reaching specific populations., Conclusions: It is hoped that the current findings will guide FCR researchers towards clinically relevant, significant research that will move the field forward. Experts nominated intervention research as the top priority, specifically exploring optimal formats of delivery including stepped care and blended models incorporating online or phone elements to increase accessibility., (© 2019 John Wiley & Sons, Ltd.)

Objective: Integrating mobile phone-based health (m-health) interventions into healthcare systems is one solution to improve access to services for the growing number of patients with chronic illness. Practical challenges such as poor recruitment and inadequate resource allocation can hamper the assessment of such interventions with clinical trial methodology. This paper highlights the challenges encountered during a pilot randomized controlled trial of an m-health medication adherence intervention and offers recommendations for future multi-site, non-drug clinical trials., Results: Eighteen patients were recruited to the study; eight were randomly allocated to the intervention arm. Intervention participants responded to their daily medication-reminder text messages, indicating that medication had been taken or not, and nurses were able to organize their calls around their workload. The trial closed prematurely primarily due to inadequate numbers of eligible patients; however, other potentially resolvable feasibility issues were identified. These included lack of infrastructure at study sites, poor screening data acquisition and management processes, and inexperience in conducting supportive care trials at participating sites. M-health intervention trials are designed to inform implementation of best supportive care practice. Adequate skills and infrastructure are research prerequisites that require careful consideration and sufficient investment for the successful execution of multi-site supportive care trials. Trial registration Australian and New Zealand Clinical Trials Register: ACTRN12612000635864.

Background: Personalised prevention of breast cancer has focused on women at very high risk, yet most breast cancers occur in women at average, or moderately increased risk (≤moderate risk)., Objectives: To determine; 1) interest of women at ≤ moderate risk (consumers) in personalised information about breast cancer risk; 2) familial cancer clinicians' (FCCs) perspective on managing women at ≤ moderate risk, and; 3) both consumers' and FCCs reactions to iPrevent, a personalised breast cancer risk assessment and risk management decision support tool., Methods: Seven focus groups on breast cancer risk were conducted with 49 participants; 27 consumers and 22 FCCs. Data were analysed thematically., Results: Consumers reported some misconceptions, low trust in primary care practitioners for breast cancer prevention advice and frustration that they often lacked tailored advice about breast cancer risk. They expressed interest in receiving personalised risk information using iPrevent. FCCs reported an inadequate workforce to advise women at ≤ moderate risk and reacted positively to the potential of iPrevent to assist., Conclusions: While highlighting a potential role for iPrevent, several outstanding issues remain. For personalised prevention of breast cancer to extend beyond women at high risk, we must harness women's interest in receiving tailored information about breast cancer prevention and identify a workforce willing to advise women., (Copyright © 2018 Elsevier Ltd. All rights reserved.)

Objective: Ethnicity and migrant status result in disparities with cancer burden and survival, with communication difficulties cited as the main barrier to access. Our research team tested a communication intervention package comprising consultation audio-recordings (ARs) and question prompt lists (QPLs) for low English-speaking (LES) patients with cancer. This study explored LES patient experiences, preferences, and recommendations regarding the communication package., Methods: Participants completed a questionnaire and qualitative interview regarding ARs and QPLs. Eligibility criteria comprised aged ≥18 years old; a consultation with an oncologist between June 1, 2015 and April 1, 2016; an Arabic, Cantonese, Greek, or Mandarin professional interpreter booked for that consultation; and randomised to receive the communication intervention., Results: Eighteen patients completed the qualitative interview and 17 completed the questionnaire. Fifteen reported listening to the AR at least once. Participants reported that QPLs and ARs provide support and assistance with remembering and understanding medical information. Both resources were seen as having applicability beyond the oncology setting in regards to improving health service delivery and continuity of care. However, patients felt that individual tailoring of the resources should be considered. Patients also found it useful to share ARs with family., Conclusions: The LES participants in this study considered the ARs and QPLs useful for most, but not all contexts. Recommendations regarding delivery and use highlight that these resources should be tailored and patient-driven. Further, patients foresaw a range of additional uses for consultation ARs within the broader healthcare context., (© 2018 John Wiley & Sons, Ltd.)

Background: Reducing ultraviolet radiation (UV) exposure and improving early detection may reduce melanoma incidence, mortality and health system costs. This study aims to evaluate the efficacy and cost-effectiveness of providing information on personal genomic risk of melanoma in reducing UV exposure at 12 months, according to low and high traditional risk., Methods: In this randomized controlled trial, participants (target sample = 892) will be recruited from the general population, and randomized (1:1 ratio, intervention versus control). Intervention arm participants provide a saliva sample, receive personalized melanoma genomic risk information, a genetic counselor phone call, and an educational booklet on melanoma prevention. Control arm participants receive only the educational booklet. Eligible participants are aged 18-69 years, have European ancestry and no personal history of melanoma. All participants will complete a questionnaire and wear a UV dosimeter to objectively measure their sun exposure at baseline, 1- and 12-month time-points, except 1-month UV dosimetry will be limited to ~250 participants. The primary outcome is total daily Standard Erythemal Doses at 12 months. Secondary outcomes include objectively measured UV exposure for specific time periods (e.g. midday hours), self-reported sun protection and skin-examination behaviors, psycho-social outcomes, and ethical considerations surrounding offering genomic testing at a population level. A within-trial and modelled economic evaluation will be undertaken from an Australian health system perspective to assess the intervention costs and outcomes., Discussion: This trial will inform the clinical and personal utility of introducing genomic testing into the health system for melanoma prevention and early detection at a population-level., Trial Registration: Australian New Zealand Clinical Trials Registry ACTRN12617000691347., (Copyright © 2018 Elsevier Inc. All rights reserved.)

Background: Many patients who require an interpreter have difficulty remembering information from their medical consultations. Memory aids such as consultation audio-recordings may be of benefit to these patients. However, there is no established means of measuring patients' memory of medical information., Objectives: This study aimed to develop a method for eliciting and coding recall of medical information in non-English-speaking patients., Design: This method, called Patient-Interpreter-Clinician coding (PICcode), was developed in the context of a phase II trial conducted in two outpatient oncology clinics in Melbourne, Australia, and was refined iteratively through consultation with an expert panel and piloting. Between-coder differences in early versions of the coding system were resolved through discussion and consensus resulting in refinements to PICcode., Results: The final version of PICcode involved transcribing, translating and coding of audio-recorded consultations and semi-structured interviews (SSI). The SSIs were designed to elicit patients' free-recall of medical information. Every unit of medical information in the consultation was identified and categorized in a coding tree. SSIs were coded to identify the extent to which information was recalled from the consultation., Discussion: The iterative changes involved in developing PICcode assisted in clarifying precise details of the process and produced a widely applicable coding system. PICcode is the most comprehensively described method of determining the amount of information that patients who use an interpreter recall from their medical consultations. PICcode can be adapted for English-speaking patients and other healthcare populations., (© 2017 The Authors Health Expectations Published by John Wiley & Sons Ltd.)

Objective: Fear of cancer recurrence (FCR) is a common concern among cancer survivors. Identifying survivors with clinically significant FCR requires validated screening measures and clinical cut-offs. We evaluated the Fear of Cancer Recurrence Inventory-Short Form (FCRI-SF) clinical cut-off in 2 samples., Methods: Level of FCR in study 1 participants (from an Australian randomized controlled trial: ConquerFear) was compared with FCRI-SF scores. Based on a biopsychosocial interview, clinicians rated participants as having nonclinical, subclinical, or clinical FCR. Study 2 participants (from a Canadian FCRI-English validation study) were classified as having clinical or nonclinical FCR by using the semistructured clinical interview for FCR (SIFCR). Receiver operating characteristic analyses evaluated the screening ability of the FCRI-SF against clinician ratings (study 1) and the SIFCR (study 2)., Results: In study 1, 167 cancer survivors (mean age: 53 years, SD = 10.1) participated. Clinicians rated 43% as having clinical FCR. In study 2, 40 cancer survivors (mean age: 68 years, SD = 7.0) participated; 25% met criteria for clinical FCR according to the SIFCR. For both studies 1 and 2, receiver operating characteristic analyses suggested a cut-off ≥22 on the FCRI-SF identified cancer survivors with clinical levels of FCR with adequate sensitivity and specificity., Conclusions: Establishing clinical cut-offs on FCR screening measures is crucial to tailoring individual care and conducting rigorous research. Our results suggest using a higher cut-off on the FCRI-SF than previously reported to identify clinically significant FCR. Continued evaluation and validation of the FCRI-SF cut-off is required across diverse cancer populations., (Copyright © 2017 John Wiley & Sons, Ltd.)

To capitalise on advances in breast cancer prevention, all women would need to have their breast cancer risk formally assessed. With ~85% of Australians attending primary care clinics at least once a year, primary care is an opportune location for formal breast cancer risk assessment and management. This study assessed the current practice and needs of primary care clinicians regarding assessment and management of breast cancer risk. Two facilitated focus group discussions were held with 17 primary care clinicians (12 GPs and 5 practice nurses (PNs)) as part of a larger needs assessment. Primary care clinicians viewed assessment and management of cardiovascular risk as an intrinsic, expected part of their role, often triggered by practice software prompts and facilitated by use of an online tool. Conversely, assessment of breast cancer risk was not routine and was generally patient- (not clinician-) initiated, and risk management (apart from routine screening) was considered outside the primary care domain. Clinicians suggested that routine assessment and management of breast cancer risk might be achieved if it were widely endorsed as within the remit of primary care and supported by an online risk-assessment and decision aid tool that was integrated into primary care software. This study identified several key issues that would need to be addressed to facilitate the transition to routine assessment and management of breast cancer risk in primary care, based largely on the model used for cardiovascular disease.

Background: Multiethnic societies face challenges in delivering evidence-based culturally competent health care. This study compared health-related quality of life and psychological morbidity in a hospital-based sample of first-generation migrants and Australian-born Anglo cancer patients, controlling for potential confounders related to migrant status. Further, it explored the relative contribution of ethnicity versus migrant-related variables., Methods: Eligible participants, recruited via 16 oncology clinics in Australia, included those over the age of 18, diagnosed with cancer (any type or stage) within the previous 12 months and having commenced treatment at least 1 month previously., Results: In total, 571 migrant patients (comprising 145 Arabic, 248 Chinese, and 178 Greek) and a control group of 274 Anglo-Australian patients participated. In multiple linear regression models adjusted for age, sex, education, marital status, socioeconomic status, time since diagnosis, and type of cancer, migrants had clinically significantly worse health-related quality of life (HRQL; 3.6-7.3 points on FACT-G, p < .0001), higher depression and anxiety (both p < .0001), and higher incidence of clinical depression (p < .0001) and anxiety (p = .003) than Anglo-Australians. Understanding the health system (p < .0001 for each outcome) and difficulty communicating with the doctor (p = .04 to .0001) partially mediated the impact of migrancy. In migrant-only analyses, migrant-related variables (language difficulty and poor understanding of the health system), not ethnicity, predicted outcomes., Conclusion: Migrants who develop cancer have worse psychological and HRQL outcomes than Anglo-Australians. Potential targets for intervention include assistance in navigating the health system, translated information, and cultural competency training for health professionals., (©AlphaMed Press.)

Purpose: Fear of cancer recurrence (FCR) is prevalent amongst survivors, and breast cancer survivors are particularly vulnerable. Currently, there are few well-validated brief measures of FCR and none specific to breast cancer. This manuscript describes the development and initial validation of a new measure of FCR for breast cancer survivors, the Concerns about Recurrence Questionnaire (CARQ), and reports its initial validation in an Australian and Danish population-based sample of breast cancer survivors., Methods: CTT analyses explored scale reliability and validity; Rasch analyses explored model fit statistics, item bias (DIF) and local dependency. Three-item, four-item and five-item versions were considered., Results: Two hundred eighteen Australian women aged 28-45 years diagnosed with early-stage breast cancer (stages 0-2) and 2001 Danish women diagnosed with breast cancer (stages 1-3) aged 26-70 completed the CARQ. Based on the results of both CTT and IRT analyses, the four-item English version of the scale performed best. Although the CTT analyses suggested that the CARQ-4 was reliable and valid in both samples, Rasch analyses identified item bias relative to age, and local dependence which may be remedied by further scale development., Conclusions: The CARQ-4 English version is currently one of the most rigorously tested brief scales of FCR available., Implications for Cancer Survivors: The availability of more valid and reliable brief measures of FCR will help to promote research and screening of FCR amongst cancer survivors.

Context: Nondisclosure of cancer diagnosis is common in many Eastern countries. Consequently, immigrant families often approach oncologists with requests for nondisclosure in Western countries., Aims: To explore differences in the attitudes and practices of Western-born and nonWestern born oncologists in Australia when faced with a nondisclosure request., Settings and Design: Using a cross-sectional design, oncologists were interviewed over the telephone., Methods: Using the snowball method, 14 Australian (Western = 9, non-Western = 5) oncologists were recruited. Oncologists participated in a semi-structured interview exploring their experiences of, and response to, a request for nondisclosure, and their perceptions of how their cultural background influenced these attitudes and responses., Analysis: The interviews were transcribed and analyzed using interpretative phenomenological analysis., Results: Six main themes emerged from the study: (1) Barriers to truthful communication, (2) an ethical and moral dilemma, (3) high costs of nondisclosure, (4) cultural influences on interpretation and understanding of requests for nondisclosure, (5) emotional impact of bad news on patients, families and oncologists, and (6) truthful disclosure as a gentle balancing act., Conclusions: All oncologists felt that the family request for nondisclosure was difficult, with many cultural and emotional nuances to take into consideration. Some immigrant Australian oncologists who had a similar cultural background as the patient/family, felt they could better understand the desire for nondisclosure. Irrespective of their cultural background, all oncologists acknowledged that breaking bad news had to be done in a gentle, gradual manner. The study suggests a need to develop a culturally sensitive cancer communication model.