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Objective: Multiple myeloma (MM) and myelodysplastic syndrome (MDS) are treatable but incurable conditions that can substantially impact the daily lives of people living with these conditions and their carers. We sought to understand the experience of people living with and carers affected by these conditions in Tasmania, a regional area of Australia. Methods: Exploratory qualitative study. People living with MM or MDS or their carers in Southern Tasmania were recruited by a haematology nurse and invited to participate in focus groups. Data collection was by groups held online and face‐to‐face in 2022. Thematic analysis was used. Results: Ten groups were held with 48 participants (n = 23 with MM, n = 9 with MDS, n = 16 carers). Key themes arising from focus groups with people living with MM/MDS were (1) Relationships and Support; (2) Positive Attitude; (3) Perception of Condition; and (4) Symptoms and Comorbidities. Some people with MM/MDS had to take on a caring role for their carer due to carer illness. Key themes arising from carer focus groups included (1) Supportive Relationships; (2) Accommodating Change; and (3) Own Needs. Not all carers viewed their caring role as burdensome. Conclusion: Future work should consider what supports are required for patients acting as carers, and carer burden should not be assumed. [ABSTRACT FROM AUTHOR]

Chronic lymphocytic leukaemia (CLL) is the most common haematological malignancy in Australia and New Zealand (ANZ). Considerable changes to diagnostic and management algorithms have occurred within the last decade. The availability of next‐generation sequencing and measurable residual disease assessment by flow cytometry allow for advanced prognostication and response assessments. Novel therapies, including inhibitors of Bruton's tyrosine kinase (BTKi) and B‐cell lymphoma 2 (BCL2) inhibitors, have transformed the treatment landscape for both treatment‐naïve and relapsed/refractory disease, particularly for patients with high‐risk genetic aberrations. Recommendations regarding appropriate supportive management continue to evolve, and special considerations are required for patients with CLL with respect to the global SARS‐CoV‐2 pandemic. The unique funding and treatment environments in Australasia highlight the need for specific local guidance with respect to the investigation and management of CLL. This consensus practice statement was developed by a broadly representative group of ANZ experts in CLL with endorsement by peak haematology bodies, with a view to providing this standardised guidance. [ABSTRACT FROM AUTHOR]

The aim of this project was to determine research priorities, barriers, and enablers for adult primary brain tumour research in Australia and New Zealand. Consumers, health professionals, and researchers were invited to participate in a two-phase modified Delphi study. Phase 1 comprised an initial online survey (n = 91) and then focus groups (n = 29) which identified 60 key research topics, 26 barriers, and 32 enablers. Phase 2 comprised two online surveys to (1) reduce the list to 37 research priorities which achieved consensus (>75% 2-point agreement) and had high mean importance ratings (n = 116 participants) and (2) determine the most important priorities, barriers, and enablers (n = 90 participants). The top ten ranked research priorities for the overall sample and sub-groups (consumers, health professionals, and researchers) were identified. Priorities focused on: tumour biology, pre-clinical research, clinical and translational research, and supportive care. Variations were seen between sub-groups. The top ten barriers to conducting brain tumour research related to funding and resources, accessibility and awareness of research, collaboration, and process. The top ten research enablers were funding and resources, collaboration, and workforce. The broad list of research priorities identified by this Delphi study, together with how consumers, health professionals, and researchers prioritised items differently, and provides an evidence-based research agenda for brain tumour research that is needed across a wide range of areas. [ABSTRACT FROM AUTHOR]

Background: Several international centres have published their experiences with outpatient autologous stem cell transplantation (ASCT) as treatment of haematological malignancies. Aim: In this single‐centre retrospective review, we aim to examine the outcomes of outpatient autograft and review healthcare resource utilisation in the pre‐cytopenic period. Methods: Patients undergoing ASCT in Royal Hobart Hospital, Tasmania between 2008 and 2018 had their records reviewed and key outcomes data collected based on whether they received inpatient/outpatient ASCT. An outpatient ASCT was defined as conditioning as an outpatient; patients could then be managed with an elective admission during the cytopenic period or admission only when clinically indicated. Results: Of 231 ASCT performed, 135 (58%) were as outpatients: 59 used carmustine‐etoposide‐cytarabine‐melphalan conditioning for lymphoma (BEAM‐ASCT) and 76 used high‐dose melphalan for myeloma and amyloidosis (MEL‐ASCT). Approximately one‐third of patients undergoing outpatient ASCT were admitted electively during nadir period; the majority of patients required minimal interventions prior to this time. The most common causes for unplanned hospitalisation (which occurred in 71 (80%) of the 89 planned outpatient transplants) were febrile neutropenia (39%) and mucositis (35%). Age was the only risk factor identified to increase risk of requiring unplanned hospitalisation. Use of oral antibiotic prophylaxis reduced febrile neutropenia rates among melphalan outpatient ASCT. Outpatient ASCT led to significantly reduced inpatient bed‐days and overall cost (approximately A$13 000–A$16 000) compared with inpatient autografts, with no significant differences in engraftment, rates of febrile neutropenia, intensive care admissions or mortality. Conclusion: Outpatient autografts may save healthcare resources without compromising patient outcomes. [ABSTRACT FROM AUTHOR]

Purpose: While central nervous system (CNS) tumors account for only 10% of adolescent and young adult (AYA) cancers, they are the leading cause of cancer death in this age group. Using national data for Australia, we describe the presentation, treatment, and survival for AYAs diagnosed with CNS tumors. Methods: A population-based study of 15–24 year-olds diagnosed with CNS tumors (low- and high-grade glioma [LGG, HGG], medulloblastoma [MB], primitive neuroectodermal tumors [PNET], ependymoma [EP]) or other (e.g., low-grade neuronal tumor) between 2007 and 2012. Clinical details were extracted from hospital medical records for each patient. Treatment centers were classified as pediatric or adult services. Results: Two hundred seventy-five patients (129 LGG, 77 HGG, 23 MB, 10 PNET, 19 EP, 17 other) were identified, with 17% treated at pediatric hospitals. Symptoms (headache [53%], nausea [31%]) were present for a median of 3 weeks before consulting a health professional. Of LGG patients, 15% had radiotherapy (RT) and 12% chemotherapy (CT). Of HGG patients, 81% had RT and 75% CT. All MB and PNET were managed with surgery, and 74% of MB and 80% of PNET had both RT and CT. Treatment did not differ by treatment center type. Five-year survival for LGG and EP was over 80%, but was 42% for HGG and 20% for PNET. Conclusions: This national, population-based study indicates similar treatment for AYA patients with CNS tumors between pediatric and adult services. Poor outcomes for HGG and PNET patients highlight the need for clinical trials of novel approaches for these tumors. [ABSTRACT FROM AUTHOR]

Background: While overall survival (OS) for cancer in adolescents and young adults (AYA) has improved, there has been little change in AYA survival for several types of sarcomas. Using national data for Australia we describe (1) the treatment centers caring for AYA sarcoma, (2) treatments provided, and (3) survival outcomes. Procedure: National population-based study assessing treatment of 15–24 year-olds diagnosed with soft tissue sarcoma (STS), bone sarcoma (BS), and Ewing family tumors (ET) between 2007 and 2012. Treatment details were abstracted from hospital medical records. Treatment centers were classified as pediatric or adult specialist AYA/sarcoma center, or other adult. Cox proportional hazard regression analyses examined associations between type of treatment center and OS. Results: Sixty-one hospitals delivered treatment to 318 patients (135 STS; 91 BS, 92 ET), with 9%, 22%, and 17% of STS, BS, and ET, respectively, treated at pediatric and 62%, 59%, and 71% at adult specialist hospitals. Of 18–24 year-olds, 82% of BS, 90% of ET, and 73% of rhabdomyosarcomas at adult specialist centers were on a trial or standard protocol, compared with 42%, 89%, and 100%, respectively, at nonspecialist adult hospitals. After adjusting for disease and patient characteristics, survival was not associated with treatment center type for any disease type. However, ET survival was poorer for patients not receiving a standard chemotherapy protocol. Conclusions: Around 10% of AYA sarcoma patients attending adult hospitals were not on a standard protocol. Poorer survival for ET patients not on a standard protocol highlights the importance of ensuring all patients receive optimal care. [ABSTRACT FROM AUTHOR]

Abstract: The controversial topic of voluntary assisted dying (VAD) is receiving significant attention at state government levels and in the community. Acknowledging potential legalisation of VAD, the Medical Oncology Group of Australia (MOGA) undertook a survey of members to inform the development of a position statement on the subject. All MOGA members were invited to complete an anonymous online survey. The survey comprised 12 closed‐response categorical questions. Descriptive statistics were used to summarise the survey data. Majority views expressed in the survey would form the basis of a MOGA position statement on VAD. A total of 362 members completed the questionnaire, representing 55% of the membership; 47% of respondents disagreed with VAD; 36% agreed with VAD and the remaining members (17%) were ‘neutral’. A clear majority position was not established. Only 14% agreed that physicians involved in VAD should be required personally to administer the lethal medication; 94% supported conscientious objection of physicians to the VAD process; 95% agreed that a palliative care physician consultation should be required and 86% agreed with the need for the involvement of specialist psychiatry medical services before a patient can be deemed as suitable for VAD. The MOGA membership expressed a range of views on the topic of VAD. A clear majority‐held view to support a MOGA position that either supports or opposes VAD was not established. The position statement that flows from the survey encourages informed debate on this topic and brings into focus important considerations. [ABSTRACT FROM AUTHOR]

Purpose: To examine the care experiences of Australian Adolescents and Young Adults (AYAs) with cancer during a period when youth cancer services (YCS) were developing across the country. Methods: A cross-sectional, self-report survey completed by 207 recently diagnosed AYAs with cancer, recruited from the population-based cancer registries of Australia's two most populous states. AYAs were 15 to 24 years old when diagnosed with any form of cancer (except melanoma <3 mm or stage I/II). Respondents indicated whether certain events/experiences occurred at various points along the cancer care pathway and the treatment centers attended. Treatment centers with YCS were identified. Results: Participating AYAs were an average of 9 months post-diagnosis. AYAs were treated in over 60 centers, with only 31% attending YCS. While experiences relating to delivery of treatment were generally positive, supportive care experiences and emotional support were missing for many. Information provision at the end of treatment was low, with 60% not receiving a treatment summary and 50% not receiving a written follow-up care plan. In addition, 42% never/rarely received information relevant to their age, and only 54% reported that healthcare professionals definitely checked their understanding of the information provided. AYAs attending YCS were more likely to report age-appropriate treatment settings, information provision, and emotional support. Conclusion: While care experiences were generally positive for most AYAs, attending YCS was associated with better communication and supportive care experiences. As only a third of the AYAs surveyed attended these services, efforts are needed to increase AYA access to YCS. [ABSTRACT FROM AUTHOR]

It has been reported that acute myeloid leukemia ( AML) patients with t(3;3)(q21;q26) translocation and monosomy 7 abnormalities may present with diabetes insipidus (DI) without neurohypophysis changes on imaging. We report a second Australian AML case with central diabetes insipidus (CDI) that presented with radiological abnormalities but without the genetic changes as previously reported. [ABSTRACT FROM AUTHOR]

Objectives: Symptoms of raised intracranial pressure (ICP) in recurrent high-grade glioma (HGG) generally require corticosteroid treatment, often causing toxicity with variable effects on ICP symptoms. Acetazolamide reduces ICP when used in other clinical non-cancer settings. The aim of the study was to explore whether the addition of oral acetazolamide enables safe dexamethasone dose reduction in management of raised ICP in recurrent HGG., Methods: Participants had recurrent HGG with any of dexamethasone recommencement, dose increase or dependency; prior/current bevacizumab was an exclusion. Eligible participants were randomised 1:1 to acetazolamide or placebo for 8 weeks. Standardised protocols were used for dexamethasone dosing, with planned dose decrease from day 5 once ICP symptoms were stable. The primary endpoint was a composite of dexamethasone dose reduction and stable Karnofsky Performance Status Secondary endpoints included toxicity and feasibility., Results: Thirty participants (15 per group) were enrolled (mean age 58 years) from seven Australian sites. The mean baseline dexamethasone dose was 6.2 mg. Mean duration on study treatment was 38 days (placebo group) and 31 days (acetazolamide group) with nine participants (30%) completing all study treatments (six placebo, three acetazolamide). Study withdrawal was due to adverse events (n=6; one placebo, five acetazolamide) and disease progression (n=6 (three per arm)). Four participants (13%) (two per arm) were stable responders. Ten participants experienced a total of 13 serious adverse events (acetazolamide arm: five participants (33%), six events, two related)., Conclusions: The study closed early due to poor accrual and increasing availability of bevacizumab. The addition of acetazolamide did not facilitate dexamethasone reduction., Trial Registration Number: ACTRN12615001072505., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2023. No commercial re-use. See rights and permissions. Published by BMJ.)

Background: Glioma accounts for approximately 80% of malignant adult brain cancer and its most common subtype, glioblastoma, has one of the lowest 5-year cancer survivals. Fifty risk-associated variants within 34 glioma genetic risk regions have been found by genome-wide association studies (GWAS) with a sex difference reported for 8q24.21 region. We conducted an Australian GWAS by glioma subtype and sex., Methods: We analyzed genome-wide data from the Australian Genomics and Clinical Outcomes of Glioma (AGOG) consortium for 7 573 692 single nucleotide polymorphisms (SNPs) for 560 glioma cases and 2237 controls of European ancestry. Cases were classified as glioblastoma, non-glioblastoma, astrocytoma or oligodendroglioma. Logistic regression analysis was used to assess the associations of SNPs with glioma risk by subtype and by sex., Results: We replicated the previously reported glioma risk associations in the regions of 2q33.3 C2orf80, 2q37.3 D2HGDH, 5p15.33 TERT, 7p11.2 EGFR, 8q24.21 CCDC26, 9p21.3 CDKN2BAS, 11q21 MAML2, 11q23.3 PHLDB1, 15q24.2 ETFA, 16p13.3 RHBDF1, 16p13.3 LMF1, 17p13.1 TP53, 20q13.33 RTEL, and 20q13.33 GMEB2 (P < .05). We also replicated the previously reported sex difference at 8q24.21 CCDC26 (P = .0024) with the association being nominally significant for both sexes (P < .05)., Conclusions: Our study supports a stronger female risk association for the region 8q24.21 CCDC26 and highlights the importance of analyzing glioma GWAS by sex. A better understanding of sex differences could provide biological insight into the cause of glioma with implications for prevention, risk prediction and treatment., (© The Author(s) 2022. Published by Oxford University Press on behalf of the Society for Neuro-Oncology.)

Medulloblastoma in adult patients is a rare condition with limited contemporary demographic and treatment outcome data available in an Australian population. We conducted a retrospective review of patterns of care and outcomes of adult patients diagnosed with medulloblastoma treated at major neuro-oncology centres across Australia between January 2010 and December 2019. A total of 80 patients were identified and the median follow-up after diagnosis was 59.2 (range 0.5-204) months. A variety of chemotherapy regimens were used in the adjuvant and recurrent settings. The median overall survival (mOS) was 78 months (IQR 17.5-94.8). Patients who had no residual disease post-resection or with SHH-subtype tumours had a numerically longer 5-year survival rate than those with residual disease post resection or non-SHH subtypes respectively. The median time to recurrence from diagnosis was 18.4 months. The median OS from 1st relapse was 22.1 months (95% CI 11.7-31.4) and mOS from second relapse was 10.2 months (95% CI 6.6 - NR). This is the largest dataset examining patterns of care of adult patients with medulloblastoma in an Australian population. Substantial variation existed in the chemotherapy agents used in the adjuvant and recurrent setting. As has been demonstrated in a paediatric population, trials such as the upcoming EORTC 1634-BTG/NOA-23 trial (PersoMed-1 study) which are tailoring treatments to molecular profiles are likely to improve outcome in adult medulloblastoma., (Copyright © 2022 Elsevier Ltd. All rights reserved.)

Objectives: Fractional (part-time) appointments are becoming more commonplace in many professions, including medicine. With respect to the contemporary oncological landscape, this highlights a critical moment in the optimisation of employment conditions to enable high-quality service provision given growing patient numbers and treatment volume intensification. Data are drawn from a broader study which aimed to better understand the workforce experiences of medical oncologists in Australia. This paper specifically aims to examine a group of clinicians' views on the consequences of fractional work in oncology., Design: Qualitative, one-on-one semistructured interviews. Interview transcripts were digitally audio recorded and transcribed verbatim. Data were subject to thematic analysis supported by the framework approach and informed by sociological methods and theory., Setting: New South Wales, Australia., Participants: Medical oncologists (n=22), including 9 female and 13 male participants, at a range of career stages., Results: Four key themes were derived from the analysis: (1) increasing fractional employment relative to opportunities for full-time positions and uncertainty about future opportunities; (2) tightening in role diversity, including reducing time available for research, mentoring, professional development and administration; (3) emerging flexibility of medical oncology as a specialty and (4) impact of fractional-as-norm on workforce sustainability and quality of care., Conclusion: Fractional appointments are viewed as increasing in oncology and the broader consequences of this major shift in medical labour remain unexamined. Such appointments offer potential for flexible work to better suit the needs of contemporary oncologists; however, fractional work also presents challenges for personal and professional identity and vocational engagement. Fractional appointments are viewed as having a range of consequences related to job satisfaction, burnout and service delivery. Further research is needed to provide a critical examination of the multiple impacts of workforce trends within and beyond oncology., Competing Interests: Competing interests: None declared., (© Author(s) (or their employer(s)) 2019. Re-use permitted under CC BY-NC. No commercial re-use. See rights and permissions. Published by BMJ.)

Although second-generation tyrosine kinase inhibitors (TKIs) show superiority in achieving deep molecular responses in chronic myeloid leukemia in chronic phase (CML-CP) compared with imatinib, the differing adverse effect (AE) profiles need consideration when deciding the best drug for individual patients. Long-term data from randomized trials of nilotinib demonstrate an increased risk of vascular AEs (VAEs) compared with other TKIs, although the natural history of these events in response to dose modifications or cessation has not been fully characterized. We retrospectively reviewed the incidence of nilotinib-associated AEs in 220 patients with CML-CP at 17 Australian institutions. Overall, AEs of any grade were reported in 95 patients (43%) and prompted nilotinib cessation in 46 (21%). VAEs occurred in 26 patients (12%), with an incidence of 4.1 events per 100 patient-years. Multivariate analysis identified age ( P = .022) and dyslipidemia ( P = .007) as independent variables for their development. There was 1 fatal first VAE, whereas the remaining patients either continued nilotinib (14 patients) or stopped it immediately (11 patients). Recurrent VAEs were associated with ongoing therapy in 7 of 14 who continued (with 2 fatal VAEs) vs 1 of 11 who discontinued ( P = .04). Nineteen of the 23 evaluable patients surviving a VAE ultimately stopped nilotinib, of whom 14 received an alternative TKI. Dose reduction or cessation because of VAEs did not adversely affect maintenance of major molecular response. These findings demonstrate that in contrast to other AEs, VAEs are ideally managed with nilotinib cessation because of the increased risk of additional events with its ongoing use., (© 2019 by The American Society of Hematology.)

Aim: A viable and sustainable medical oncology profession is integral for meeting the increasing demand for quality cancer care. The aim of this study was to explore the workforce-related experiences, perceptions and career expectations of early-career medical oncologists in Australia., Methods: A mixed-methods design, including a survey (n  =  170) and nested qualitative semistructured interviews (n  =  14) with early-career medical oncologists. Recruitment was through the Medical Oncology Group of Australia. Qualitative data were thematically analyzed and for the survey results, logistic regression modeling was conducted., Results: Early-career medical oncologists experienced uncertainty regarding their future employment opportunities. The competitive job market has made them cautious about securing a preferred job leading to a perceived need to improve their qualifications through higher degree training and research activities. The following themes and trends were identified from the qualitative and quantitative analyses: age, career stage and associated early-career uncertainty; locale, professional competition and training preferences; participation in research and evolving professional expectations; and workload and career development opportunities as linked to career uncertainty., Conclusion: Perceived diminished employment opportunities in the medical oncology profession, and shifting expectations to be "more qualified," have increased uncertainty among junior medical oncologists in terms of their future career prospects. Structural factors relating to adequate funding of medical oncology positions may facilitate or inhibit progressive change in the workforce and its sustainability. Workforce planning and strategies informed by findings from this study will be necessary in ensuring that both the needs of cancer patients and of medical oncologists are met., (© 2018 John Wiley & Sons Australia, Ltd.)

Background: The aim of this study was to understand the current and future challenges for the Australian medical oncologist workforce., Methods: Utilising an on-line self-administered questionnaire, this cross-sectional study collected data from members of the Medical Oncology Group of Australia on workforce-related issues. Participants consisted of medical oncology specialist advanced trainees, early-career oncologists (ECOs), and medical oncology consultants., Findings: Of the 633 members, 354 completed the questionnaire, representing a 55.9% response rate. Based on Medical Oncology Group of Australia membership, the number of medical oncologists has increased since the previous workforce study in 2009, with an uncertainty among junior medical oncologists regarding their future career prospects. The majority of participants worked in capital cities and metropolitan areas within the three most populous Australian states. Almost half (45%) of ECOs and consultants are undertaking or have completed a higher degree. A large number of advanced trainees (93%) and half of ECOs in this study were concerned about their future career prospects. For these participants, most were satisfied with the supervision they received (60% trainees and 69% ECOs) but only half of these participants (47% trainees and 52% ECOs) received any mentoring in their current or previous role. Compared to trainees and ECOs, consultants reported spending significantly more hours on administration per week; trainees 5.3 hours, ECOs 5.8 hours, consultants 7.5 hours (P < .031) and see a significantly greater number of patients per week; trainees 34 patients, ECOs 34 patients and consultants 49 patients (P < .001)., Interpretation: Workforce challenges were unique across different career stages in oncology; trainees, ECOs and consultants. Work intensity, mentorship and career prospects were amongst the emergent issues highlighted in this study., (Crown Copyright © 2018. Published by Elsevier Inc. All rights reserved.)

Purpose: This study investigated the impact of fertility-related discussions on Adolescent and Young Adult (AYA) cancer patients' quality of life (QoL) and the factors influencing provision of these discussions., Methods: Recruitment was conducted through population-based state cancer registries. Eligible AYAs were 15-24 years at diagnosis, 3-24 months postdiagnosis, with any cancer (except early stage melanoma). As part of a larger survey, AYAs were asked about their experiences of fertility-related discussions and QoL (FACT-G)., Results: Of the 207 AYAs returning surveys (29% response rate) 88% reported a discussion about infertility risks, 75% reported a discussion about preservation options and 59% were offered a referral to a fertility specialist. Patients attending health services with an AYA focus were more likely than those attending other types of centers to report discussions of fertility preservation (FP) options (85% versus 67%) and referrals (75% versus 49%). Social well-being was positively related to discussions about preservation options and being provided fertility risk information in a sensitive, supportive manner., Conclusions: Providing a sensitive and proactive discussion about fertility-related risks may benefit AYAs' well-being. Services with an AYA focus are fulfilling their mandate of ensuring optimal fertility-related care for AYA cancer patients.

Objective: To examine the relationship between the cancer care experiences of adolescents and young adults (AYAs) and their quality of life., Methods: Two hundred and nine AYAs completed a cross-sectional, self-report survey distributed through the population-based cancer registries in 2 Australian states (New South Wales and Victoria). Eligible AYAs were 15 to 24 years old when diagnosed with any cancer (excluding early-stage melanoma) and were 3 to 24 months post-diagnosis. Questions examined whether particular care experiences occurred for the patient at different points in the cancer care pathway, including diagnosis, treatment, inpatient care, and at the end of treatment. Quality of life was assessed using the Functional Assessment of Cancer Therapy-General scale., Results: Positive experiences of care at diagnosis, during treatment, during inpatient stays, and when finishing treatment were associated with higher functional, emotional, and social well-being. However, these associations generally became nonsignificant when communication and support experiences were included in the model. Inpatient experiences positively influenced emotional well-being over and above the effect of communication and support experiences., Conclusions: The results suggest that, for most AYAs' quality of life outcomes, positive experiences of age-appropriate communication and emotional support may underpin the effect of positive experiences of care throughout the cancer care pathway. The results support the need for communication and support tailored to an AYA audience, as recognised by recent Australian and international guidelines on the care of AYAs with cancer., (Copyright © 2017 John Wiley & Sons, Ltd.)