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Increased long-term phosphorus accumulation reduces carbon sequestration in mid-latitude peatlands reliant on atmospheric nutrient sources, according to a synthesis of data from Central Europe, North America, Chile, Sweden and the UK.

Present-day lake water phosphorus (P) enrichment and accelerated P cycling are changes superimposed on a dynamic Holocene history of landscape development following glaciation, changes in climate, and long-term low-intensity human activity. Knowledge of the history of long-term P dynamics is essential for understanding present-day landscape P export and for managing both terrestrial and aquatic environments. This study is the first attempt to constrain the timing and magnitude of terrestrial changes in Holocene P dynamics across the Northern Hemisphere using lake sediment records. Here we reconstruct trajectories in terrestrial Holocene P dynamics for the Northern Hemisphere. We apply a simple process model to published lake sediment geochemical P records from 24 sites, producing records of landscape P yield and reconstructing lake water total phosphorus (TP) concentrations. Individual site trajectories of landscape P yield and lake water TP vary systematically, with differences attributable to local landscape development history. Three distinct traits are apparent. Mountain sites with minimal direct human impact show falling P supply and conform to conceptual models of natural soil development (Trait 1). Lowland sites where substantial (pre-)historic agriculture was present show progressively increasing P supply (Trait 2). Lowland sites may also show a rapid acceleration in P supply over the last few centuries, where high-intensity land use, including settlements and farming, is present (Trait 3). Where data availability permitted comparison, our reconstructed TP records agree well with monitored lake water TP data, and our sediment-inferred P yields are comparable to reported catchment export coefficients. Comparison with diatom-inferred TP reveals good agreement for recent records. Our reconstructions form the first systematic assessment of average terrestrial P export for the Northern Hemisphere over the Holocene and provide the empirical data needed for constraining long-term landscape P cycling models and values for terrestrial P export that could be used for ocean P cycling models. The long-term perspective provided by our sediment-inferred TP can be used to identify pre-disturbance baselines for lake water quality, information essential to target-driven lake management. We find the first detectable anthropogenic impacts on P cycling ca. 6000 BP, with more substantial impacts as early as 3000 BP. Consequently, to characterize pre-disturbance lake P conditions at Trait 2 and Trait 3 sites, it is necessary to consider time periods before the arrival of early farmers. Our use of trait classifications has a predictive power for sites without sediment records, allowing prediction of TP baselines and P trajectories based on regional landscape development history.

Objective: Patient reported outcome measures (PROMs) are commonly collected in melanoma research. However, they are not used to guide immediate clinical care in Australia. This study explored the views and experiences of patients with Stage III melanoma and clinic staff during implementation of an electronic Patient-Reported Outcome Measures in melanoma (ePROMs-MEL) pilot to assess distress and quality of life., Methods: A prospective mixed-methods study in specialist melanoma clinics in Sydney, Australia between May 2021 and February 2023. Forty-two post-ePROMs implementation surveys and 17 semi-structured interviews were undertaken among patients and staff (including oncologists, melanoma nurses and clinic managers). Survey responses were tabulated using Likert scales and interview transcripts analysed thematically., Results: Of the 31 patient survey responses, over 90% reported ePROMs were easy to complete and measured important components of their health and wellbeing. Of the 11 staff surveys, over 50% reported ePROMs to be useful when allied health referrals were accessible but found implementation disruptive to clinic workflows. Six themes about ePROMs in clinical care emerged during data analysis: (1) promoting self-reflection; (2) conversation-starters; (3) timing and setting; (4) fit for purpose questionnaires; (5) resource issues; (6) value and limitations of ePROMs., Conclusion: Patients overwhelmingly supported the real-time collection of ePROMs for their immediate care. In contrast, staff support was conditional on resources to maximise clinical care efficiency and minimise administrative burden., Trial Registration: Australia and New Zealand Clinical Trials Registry: anzctr.org.au/ACTRN12620001149954.aspx., (© 2024 John Wiley & Sons Ltd.)

Objectives: This is a protocol for a Cochrane Review (intervention). The objectives are as follows: To identify and assess the effect of support interventions focused on psychological, social, and emotional outcomes for bereaved parents (including birth and non-birthing mothers, fathers, partners) and family members of parents (e.g. grandparents; siblings) who have experienced stillbirth or neonatal death., (Copyright © 2024 The Cochrane Collaboration. Published by John Wiley & Sons, Ltd.)

Background: Dual anti-human epidermal growth factor receptor 2 (HER2) blockade has improved the outcomes of patients with early and metastatic HER2-positive breast cancer. Here we present the final 10-year analysis of the ALTTO trial., Patients and Methods: The ALTTO trial (NCT00490139) is a prospective randomized, phase III, open-label, multicenter study that investigated the role of adjuvant chemotherapy and trastuzumab alone, in combination or sequentially with lapatinib. The primary endpoint was disease-free survival (DFS) and secondary endpoints included overall survival (OS), time to distant recurrence and safety., Results: Overall, 6281 patients with HER2-positive early breast cancer were included in the final efficacy analysis in three treatment groups: trastuzumab (T), lapatinib + trastuzumab (L + T) and trastuzumab followed by lapatinib (T→L). Baseline characteristics were well balanced between groups. At a median follow-up of 9.8 years, the addition of lapatinib to trastuzumab and chemotherapy did not significantly improve DFS nor OS. The 10-year DFS was 77% in T, 79% in L + T and 79% in T→L, and the 10-year OS was 87%, 89% and 89%, respectively. The incidence of any cardiac event was low and similar in the three treatment groups., Conclusions: With a longer follow-up, no significant improvement was observed in DFS in patients treated with dual anti-HER2 blockade with lapatinib + trastuzumab compared to trastuzumab alone. The 10-year survival rates for the combination group are consistent with other studies that have explored dual anti-HER2 therapy., (Copyright © 2024 The Author(s). Published by Elsevier Ltd.. All rights reserved.)

Background: Equity is fundamental to health promotion programmes. However, unintentional or unseen barriers may exist for some underserved groups. We aimed to identify how to ensure equitable access and engagement for diverse parent carers of disabled children to benefit from health promotion programmes., Methods: We purposively sampled parent carers with potentially intersecting characteristics including those who self-identified as from ethnic groups, whose children were educated other than at school, with sensory impairments, or neurodiversity, and fathers. Participants were recruited through local and national organisations and parent carer networks. Data collection involved semi-structured individual interviews, which were transcribed verbatim and analysed thematically and iteratively alongside data collection. Core researchers performed early analysis independently, followed by research team and advisory group cross-validation., Results: Thirty-six parent carers with intersecting characteristics across the sampled backgrounds participated. We identified various perceived barriers around finding out about, attending and engaging with health programmes. We organised the findings into five themes focused on concepts capturing challenges and potential solutions to contextual barriers to access and participation in health programmes. (i) Reach-judiciously using targeted and universal strategies to ensure equitable distribution; (ii) Credibility-demonstrating trustworthiness of those advertising and/or delivering the programme; (iii) Opportunity-ensuring that the programme is seen as fulfilling a relevant need; (iv) Reservations-addressing barriers of readiness to participate; and (v) Optimisation-tailoring to improve the inclusivity of the programme delivery., Conclusion: We identified modifiable factors that impede members of some social groups from engaging with, and benefiting from, health promotion programmes, and potential solutions. We advocate a multifaceted approach is required from outreach to delivery, tailored to be mindful of extant diverse needs of parent carers in underserved communities. We catalogue key considerations to inform implementation strategies to optimise equity in health programmes for parent carers. The implications are likely transferable to other interventions and contexts., Competing Interests: The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest., (Copyright © 2024 Harniess, McGlinchey, McDonald, Boyle, Garrood, Logan, Morris and Borek.)

Amino acid (AA)-related inherited metabolic disorders (IMDs) and urea cycle disorders (UCDs) require strict dietary management including foods low in protein such as fruits, vegetables and starchy roots. Despite this recommendation, there are limited data on the AA content of many of these foods. The aim of this study is to describe an analysis of the protein and AA content of a range of fruits, vegetables and starchy roots, specifically focusing on amino acids (AAs) relevant to AA-related IMDs such as phenylalanine (Phe), methionine (Met), leucine (Leu), lysine (Lys) and tyrosine (Tyr). AA analysis was performed using high-performance liquid chromatography (HPLC) on 165 food samples. Protein analysis was also carried out using the Dumas method. Foods were classified as either 'Fruits', 'Dried fruits', 'Cruciferous vegetables', 'Legumes', 'Other vegetables' or 'Starchy roots'. 'Dried fruits' and 'Legumes' had the highest median values of protein, while 'Fruits' and 'Cruciferous vegetables' contained the lowest median results. 'Legumes' contained the highest and 'Fruits' had the lowest median values for all five AAs. Variations were seen in AA content for individual foods. The results presented in this study provide useful data on the protein and AA content of fruits, vegetables and starchy roots which can be used in clinical practice. This further expansion of the current literature will help to improve diet quality and metabolic control among individuals with AA-related IMDs and UCDs.

Background: The Stop Cancer PAIN Trial was a phase III pragmatic stepped wedge cluster randomised controlled trial which compared effectiveness of screening and guidelines with or without implementation strategies for improving pain in adults with cancer attending six Australian outpatient comprehensive cancer centres (n = 688). A system for pain screening was introduced before observation of a 'control' phase. Implementation strategies introduced in the 'intervention' phase included: (1) audit of adherence to guideline recommendations, with feedback to clinical teams; (2) health professional education via an email-administered 'spaced education' module; and (3) a patient education booklet and self-management resource. Selection of strategies was informed by the Capability, Opportunity and Motivation Behaviour (COM-B) Model (Michie et al., 2011) and evidence for each strategy's stand-alone effectiveness. A consultant physician at each centre supported the intervention as a 'clinical champion'. However, fidelity to the intervention was limited, and the Trial did not demonstrate effectiveness. This paper reports a sub-study of the Trial which aimed to identify factors inhibiting or enabling fidelity to inform future guideline implementation initiatives., Methods: The qualitative sub-study enabled in-depth exploration of factors from the perspectives of personnel at each centre. Clinical champions, clinicians and clinic receptionists were invited to participate in semi-structured interviews. Analysis used a framework method and a largely deductive approach based on the COM-B Model., Results: Twenty-four people participated, including 15 physicians, 8 nurses and 1 clinic receptionist. Coding against the COM-B Model identified 'capability' to be the most influential component, with 'opportunity' and 'motivation' playing largely subsidiary roles. Findings suggest that fidelity could have been improved by: considering the readiness for change of each clinical setting; better articulating the intervention's value proposition; defining clinician roles and responsibilities, addressing perceptions that pain care falls beyond oncology clinicians' scopes of practice; integrating the intervention within existing systems and processes; promoting patient-clinician partnerships; investing in clinical champions among senior nursing and junior medical personnel, supported by medical leaders; and planning for slow incremental change rather than rapid uptake., Conclusions: Future guideline implementation interventions may require a 'meta-implementation' approach based on complex systems theory to successfully integrate multiple strategies., Trial Registration: Registry: Australian New Zealand Clinical Trials Registry; number: ACTRN 12615000064505; data: https://www.anzctr.org.au/Trial/Registration/TrialReview.aspxid=367236&isReview=true ., (© 2024. The Author(s).)

Importance: Chemotherapy-induced peripheral neuropathy (CIPN) is a substantial adverse effect of anticancer treatments. As such, the assessment of CIPN remains critically important in both research and clinic settings., Objective: To compare the validity of various patient-reported outcome measures (PROMs) with neurophysiological and sensory functional measures as the optimal method of CIPN assessment., Design, Setting, and Participants: This cohort study evaluated participants treated with neurotoxic chemotherapy across 2 cohorts using a dual-study design. Participants commencing treatment were assessed prospectively at beginning of neurotoxic treatment, midtreatment, and at the end of treatment. Participants who completed treatment up to 5 years prior were assessed cross-sectionally and completed a single assessment time point. Participants were recruited from oncology centers in Australia from August 2015 to November 2022. Data analysis occurred from February to November 2023., Exposures: Neurotoxic cancer treatment including taxanes, platinums, vinca-alkaloids, proteasome inhibitors, and thalidomide., Main Outcomes and Measures: CIPN was assessed via PROMs (European Organization for Research and Treatment of Cancer Quality of Life Questionnaire [EORTC-CIPN20], Functional Assessment of Cancer Therapy/Gynecological Cancer Group Neurotoxicity Questionnaire (FACT/GOG-Ntx), and the patient-reported outcomes version of the Common Terminology Criteria for Adverse Events [PRO-CTCAE]), neurological and neurophysiological assessment (Total Neuropathy Score and sural and tibial compound nerve amplitudes), and sensory measures (Grating orientation, Von Frey monofilament, and 2-point discrimination tasks). Core measurement properties of CIPN outcome measures were evaluated. Convergent and known-groups validity was assessed cross-sectionally following treatment completion, and responsiveness was evaluated prospectively during treatment. Neurological, neurophysiological, and sensory outcome measure scores were compared between those who reported high and low levels of CIPN symptoms using linear regressions., Results: A total of 1033 participants (median [IQR] age, 61 [50-59] years; 676 female [65.4%]) were recruited to this study, incorporating 1623 assessments. PROMs demonstrated best ability to accurately assess CIPN (convergent validity), especially the PRO-CTCAE composite score (r = 0.85; P < .001) and EORTC-CIPN20 (r = 0.79; P < .001). PROMS also demonstrated the best ability to discriminate between CIPN severity (known-groups validity) and to detect changes at onset of CIPN development (responsiveness), especially for EORTC-CIPN20 (d = 0.67; 95% CI, 0.52-0.83), FACT/GOG-Ntx (d = 0.65; 95% CI, 0.49-0.81) and the PRO-CTCAE (d = 0.83; 95% CI, 0.64-1.02). Other measures did not achieve threshold for convergent validity (α < 0.7). Neurophysiological and sensory measures did not demonstrate acceptable responsiveness. In regression models, neurological, neurophysiological, and sensory outcome measures were significantly impaired in participants who reported high levels of CIPN symptoms compared with those who reported low levels of CIPN symptoms., Conclusions and Relevance: In this cohort study of 1033 cancer patients, PROMs were the only measures to satisfy all 3 core measurement property criteria (convergent validity, known-groups validity, and responsiveness). These findings suggest that adoption of PROMs in clinical practice can equip clinicians with valuable information in assessing CIPN morbidity.

Diagnostic genetic testing and non-invasive prenatal testing (NIPT) for conditions associated with disability are becoming increasingly available to consumers. This genetic information can be used in the disability setting to inform factors such as prognosis, management, and reproductive decision-making. Genetic counselors (GCs) play an important role in the provision of genetic testing and NIPT, and their attitudes toward disability can influence how genetic information is communicated and shape patients' responses. This study aimed to evaluate and describe Australasian GCs' experience with and attitudes toward disabilities to identify potential biases and training needs. A cross-sectional survey was distributed to 400 GCs registered with the Human Genetics Society of Australasia. Of the 106 respondents (participation rate: 26%), a significantly greater proportion were more comfortable interacting with individuals with physical disability as compared to intellectual disability (p < 0.001). GCs with personal experiences with disabilities reported significantly greater comfort interacting with people with intellectual disability than those without experience (p = 0.012). Qualitative analysis revealed discomfort was less reflective of bias than inexperience and apprehension about communicating disrespectfully. GCs believed people with disabilities experience discrimination and that having a disability could make a person stronger, wiser, and more motivated. Most GCs viewed prenatal testing for disabilities positively as it allowed for decisions regarding continuing the pregnancy and/or provided opportunity to prepare. Challenges identified for prenatal counseling included negative societal attitudes and the low visibility of disability. GCs felt that 'personal beliefs' was the primary factor influencing the decision to terminate a pregnancy affected by disability. These findings highlight important education and training needs for GCs to improve preparedness and comfort when communicating with people with a disability., (© 2023 The Authors. Journal of Genetic Counseling published by Wiley Periodicals LLC on behalf of National Society of Genetic Counselors.)

Purpose: This study explored the value of metastatic breast cancer (MBC) support groups, and factors that affect attendance, from the perspective of people with MBC., Methods: Semi-structured interviews were conducted with 28 women with MBC (support group attendees n = 16; non-attendees n = 12) between January 2022 and July 2023. Data were analysed using an inductive approach to thematic analysis., Results: Three themes were generated: the value of sharing experiential knowledge, spaces for open and honest conversations, and opportunities to find connection and community. These factors were the main reasons that some participants valued, and chose to attend, an MBC support group. Stage-specificity and professional facilitation were identified as important aspects of group structure. Key reasons for non-attendance were concerns about misinformation, confronting the death of group members, and satisfaction with existing support networks., Conclusions: MBC support groups are beneficial for some people with MBC, providing opportunities to connect with others with the same diagnosis. For others, different forms of peer support such as online forums or one-on-one support may be preferred. We argue that ensuring those with MBC have equal access to the peer support they need will be essential in supporting people to live as well as possible with MBC., Implications for Cancer Survivors: MBC support groups, if appropriately led, can provide emotional and informational benefits for people with MBC. This research may also have relevance to other metastatic cancers where novel therapies are extending survival, resulting in an emerging cancer population with distinct supportive and survivorship needs., (© 2024. The Author(s).)

Objectives: Many oncology health professionals (HPs) report communicating with carers as complex; and receive limited carer-relevant training. We developed an online HP education program for supporting and managing carer involvement (eTRIO). We aimed to assess whether HPs' self-efficacy in carer communication, knowledge, and decision-making preferences improve following eTRIO. Satisfaction and implementation potential were assessed., Methods: This type 1 hybrid effectiveness-implementation study used a pre-post single arm intervention design. HPs completed baseline measures, the eTRIO online module, and measures at 1- and 12-weeks post-intervention. Measures included: self-efficacy in carer communication (13-items), applied knowledge (7-items), preference for carer involvement in decisions (1-item). Fifteen of participants completed feedback interviews which underwent thematic analysis. User analytics were collected and analysed., Results: Fifty-six HPs completed baseline measures, 42 completed post- and follow-up measures. At baseline mean self-efficacy score was 88. HPs showed a statistically significant increase in self-efficacy post-intervention (mean = 105.8, CI [12.99, 20.47]), maintained at 12-weeks (mean = 101.1, CI [8.00, 15.72]). There were no changes in knowledge or decision-making preferences. Program engagement and satisfaction were high, 86.7% participants rated eTRIO as very/extremely helpful., Conclusions and Practice Implications: eTRIO provided HPs with confidence to effectively engage with carers and manage complex situations such as family dominance. These gains are noteworthy, as conflict with families/carers contributes to HP burnout., Competing Interests: Declaration of Competing Interest The authors declare that they have no known competing financial interests or personal relationships that could have appeared to influence the work reported in this paper., (Copyright © 2024. Published by Elsevier B.V.)

Palliative care is a comprehensive approach aimed at enhancing the quality of life of patients and their families living with serious illnesses such as breast cancer. This approach includes assessing and managing pain and other physical symptoms, attending to psychosocial and spiritual aspects of care, fostering effective communication and decision making, and providing support in coordinating care that upholds a person's values and preferences from the time of diagnosis throughout the illness trajectory. This type of care can be provided by palliative care specialists (ideally an interprofessional team) working alongside the oncology team, referred to as subspecialty palliative care. Conversely, the fundamental aspects of this approach, which we sometimes call primary palliative care, are provided by all clinicians caring for patients with breast cancer. Given that access to subspecialty palliative care can vary globally, especially in rural and resource-constrained settings, it is imperative for all oncology clinicians to receive training in the core components of palliative care. This study aims to provide a basic framework to recognize what the core primary palliative care skills are in routine oncology practice, to delineate basic serious illness communication strategies, and to introduce when to consider the integration of subspecialty palliative care into the care of patients with breast cancer.

Introduction: Parent carers of children with special educational needs or disabilities are at risk of poorer health and wellbeing outcomes because of the distinct and challenging circumstances they face. Evaluations of interventions promoting the health of parent carers should focus on measuring the aspects of health and wellbeing which are most relevant to this group. As part of a programme of research on parent carer-focused interventions, this study aimed to understand which aspects of health and wellbeing are perceived by parent carers as most meaningful and important., Methods: A qualitative study using semistructured online interviews was conducted. A purposive sample of parent carers was interviewed about relevant health and wellbeing outcomes. Transcripts were analysed thematically., Results: Thirty parent carers were interviewed, 19 of whom had experienced a health-promoting intervention, either as participants (n = 14) or facilitators (n = 5). Three main themes were identified: 'self, identity and beliefs'; 'social connections and support' and 'health-promoting practices and outcomes.' Each theme encompassed the challenges participants faced, and the changes that helped them overcome these challenges. 'Self-identity' challenges focused on the overwhelming nature of the parental care role and the emotional impact of this. Changes were brought about by developing a positive mindset, increasing confidence, and reconnecting with aspects of their identity which were important to them before they became parent carers. Challenges related to 'social connections' reflected parent carers' isolation. Change was brought about through increased peer support and peer interactions. Parent carers experienced challenges in terms of 'health-promoting activities' because they lacked free time and experienced poor physical health. Changes were brought about by engagement in health-promoting activities of various kinds., Conclusion: Parent carers view health and wellbeing in terms of overcoming the common challenges they face as a group. These challenges reflect the ways in which their physiological and psychological needs are often unmet. Researchers interested in measuring parent carer health and wellbeing should consider the specific challenges this group face, as well as theoretical frameworks which can make sense of these challenges, such as self-determination theory., Patient or Public Contribution: Our team carries out patient and public involvement (PPI) through a Family Faculty group facilitated by a Family Involvement Co-ordinator (A. McD.) who is herself a parent carer. A study-specific PPI working group was established which included members of the Family Faculty. The PPI group advised on various aspects of the research as reported in the paper. The manuscript was co-authored by the team's Family Involvement Co-ordinator (A. McD.)., (© 2024 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Carers often assume key roles in cancer care. However, many carers report feeling disempowered and ill-equipped to support patients. Our group published evidence-based guidelines (the Triadic Oncology [TRIO] Guidelines) to improve oncology clinician engagement with carers and the management of challenging situations involving carers., Objective: To facilitate implementation of the TRIO Guidelines in clinical practice, we aimed to develop, iteratively refine, and conduct user testing of a suite of evidence-based and interactive web-based education modules for oncology clinicians (e-Triadic Oncology [eTRIO]), patients with cancer, and carers (eTRIO for Patients and Carers [eTRIO-pc]). These were designed to improve carer involvement, communication, and shared decision-making in the cancer management setting., Methods: The eTRIO education modules were based on extensive research, including systematic reviews, qualitative interviews, and consultation analyses. Guided by the person-based approach, module content and design were reviewed by an expert advisory group comprising academic and clinical experts (n=13) and consumers (n=5); content and design were continuously and iteratively refined. User experience testing (including "think-aloud" interviews and administration of the System Usability Scale [SUS]) of the modules was completed by additional clinicians (n=5), patients (n=3), and carers (n=3)., Results: The final clinician module comprises 14 sections, requires approximately 1.5 to 2 hours to complete, and covers topics such as carer-inclusive communication and practices; supporting carer needs; and managing carer dominance, anger, and conflicting patient-carer wishes. The usability of the module was rated by 5 clinicians, with a mean SUS score of 75 (SD 5.3), which is interpreted as good. Clinicians often desired information in a concise format, divided into small "snackable" sections that could be easily recommenced if they were interrupted. The carer module features 11 sections; requires approximately 1.5 hours to complete; and includes topics such as the importance of carers, carer roles during consultations, and advocating for the patient. The patient module is an adaptation of the relevant carer module sections, comprising 7 sections and requiring 1 hour to complete. The average SUS score as rated by 6 patients and carers was 78 (SD 16.2), which is interpreted as good. Interactive activities, clinical vignette videos, and reflective learning exercises are incorporated into all modules. Patient and carer consumer advisers advocated for empathetic content and tone throughout their modules, with an easy-to-read and navigable module interface., Conclusions: The eTRIO suite of modules were rigorously developed using a person-based design methodology to meet the unique information needs and learning requirements of clinicians, patients, and carers, with the goal of improving effective and supportive carer involvement in cancer consultations and cancer care., (©Rebekah Laidsaar-Powell, Sarah Giunta, Phyllis Butow, Rachael Keast, Bogda Koczwara, Judy Kay, Michael Jefford, Sandra Turner, Christobel Saunders, Penelope Schofield, Frances Boyle, Patsy Yates, Kate White, Annie Miller, Zoe Butt, Melanie Bonnaudet, Ilona Juraskova. Originally published in JMIR Medical Education (https://mededu.jmir.org), 17.04.2024.)

Background: Evidence to guide intrapartum care when an unborn baby has died is limited., Aims: To explore parents' experiences of care during labour of an antepartum stillbirth., Materials and Methods: Semi-structured interviews with 18 bereaved parents from across Australia. Content analysis was conducted., Findings: Two broad themes were identified: 'explaining every step' and 'helping us feel like parents.' Sub-themes under the first broad theme, 'explaining every step', were 'how and when information was given' and 'what happens next.' 'Like any other parent', 'feeling the pain' and 'everything is clouded' were sub-themes of the second broad theme. These findings mapped to current Australian clinical practice guidelines for bereavement care around stillbirth and neonatal death, ie good communication, recognition of parenthood, shared decision making and effective support., Conclusions: This study on parents' experiences of labour with a fetal death in utero brings an important perspective to intrapartum care for this group. As far as we are aware, this study is the first to focus solely on this aspect of care. Our findings could be readily mapped to the four perinatal bereavement care goals. Parents wanted care providers to facilitate their choices, their sense of control, their autonomy and their agency. They wanted to feel that they had received the 'best' care available., (© 2023 The Authors. Australian and New Zealand Journal of Obstetrics and Gynaecology published by John Wiley & Sons Australia, Ltd on behalf of Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

Purpose: To examine the role and value of specialist metastatic breast care nurses in Australia from the perspective of metastatic breast care nurses, patients, and family members. Metastatic breast cancer (mBC) is treatable yet incurable, with distinct supportive care needs, yet many of these needs are unmet., Method: Diverse sampling methods were used to recruit 10 people with mBC, 5 family members and 10 metastatic breast care nurses. Semi-structured interviews were conducted online or by telephone during August-December 2020, and analysed thematically., Results: The role of the specialist nurse was strongly valued within and across participant groups, with close alignment regarding what was highly valued. Three themes were identified. First, nurses played a vital role in giving voice and visibility to patients with mBC in a healthcare system in which they often felt invisible. Second, nurses combined their clinical and psychosocial skills with a sense of authentic engagement to create a safe space for those with mBC to discuss their feelings, experiences, and topics, especially those that were unlikely to be discussed in their other social and clinical interactions. Finally, nurses supported patients in living as well as possible while managing symptoms, ongoing treatment, and attendant psychosocial impacts of an incurable and life-limiting condition., Conclusions: This study underscores the central importance of metastatic breast care nurses in enhancing patient well-being, bridging gaps in care, and offering much-needed support. By addressing patients' emotional, clinical, and social needs, these specialist nurses contribute to a more holistic and compassionate approach to managing mBC., Competing Interests: Declaration of competing interest None declared., (Copyright © 2024. Published by Elsevier Ltd.)

Background: Web-based learning activities are key components of continuing medical education (CME) for health care professionals (HCPs). However, the published outcomes of web-based educational interventions for early breast cancer (EBC) are limited., Objective: This study aims to objectively assess knowledge, competence, and performance among HCPs following participation in 2 EBC-focused CME activities and to identify the remaining educational gaps., Methods: We developed 2 CME-accredited web-based educational activities addressing high-risk EBC, including integration of shared decision-making to optimize patient care (touchMDT) and stratification for early identification of high-risk patients and novel treatment strategies (touchPANEL DISCUSSION). Knowledge, competence, and performance were assessed before and after the activities against an expanded outcomes framework (levels 1-5) using self-reported questionnaires and an analysis of anonymized data extracted from patient records., Results: Six months after the launch of the activity, 7047 and 8989 HCP participants engaged with touchMDT and touchPANEL DISCUSSION, respectively. The overall satisfaction was 82% (a total score of 20.6 out of 25) for the touchMDT and 88% (a total score of 21.9 out of 25) for the touchPANEL DISCUSSION. For the evaluation of knowledge and competence (50 respondents before the activity and 50 learners after the activity), there was a significant increase in the mean number of correctly answered questions from pre- to postactivity (touchMDT: median 4.0, IQR 3.0-5.0 to median 5.5, IQR 4.0-7.0; mean 4.00, SD 1.39 to mean 5.30, SD 1.56 and touchPANEL DISCUSSION: median 4.0, IQR 4.0-5.0 to median 6.0, IQR 5.0-7.0; mean 4.32, SD 1.30 to mean 5.88, SD 1.49; both P<.001). A significant improvement in self-reported performance (50 respondents before the activity and 50 learners after the activity) was observed in a combined analysis of both activities (median 3.0, IQR 2.0-3.0 to median 4.0, IQR 3.0-5.0; mean 2.82, SD 1.08 to mean 4.16, SD 1.45; P<.001). Patient record analysis (50 respondents before the activity and 50 learners after the activity) showed that the HCPs used a range of measures to determine EBC recurrence risk and revealed no significant differences in adjuvant therapies used before and after the activity (P=.97 and P>.99 for Ki-67 <20% and Ki-67 ≥20% tumors, respectively). The remaining educational gaps included strategies for implementing shared decision-making in clinical practice and the use of genetic and biomarker testing to guide treatment selection., Conclusions: Brief, web-based CME activities on EBC were associated with an improvement in HCP knowledge, competence, and self-reported performance and can help identify unmet needs to inform the design of future CME activities., (©Michael Gnant, Khatijah Lim Abdullah, Frances Boyle, Chiun-Sheng Huang, Katie Bickford, Sola Neunie, Alexander Noble, Anne Nunn, Caroline Sproat, Nadia Harbeck, Carlos Barrios. Originally published in JMIR Formative Research (https://formative.jmir.org), 21.03.2024.)

Clinical trials frequently include multiple end points that mature at different times. The initial report, typically based on the primary end point, may be published when key planned co-primary or secondary analyses are not yet available. Clinical trial updates provide an opportunity to disseminate additional results from studies, published in JCO or elsewhere, for which the primary end point has already been reported. Two years of adjuvant abemaciclib combined with endocrine therapy (ET) resulted in a significant improvement in invasive disease-free survival (IDFS) and distant relapse-free survival (DRFS) that persisted beyond the 2-year treatment period in patients with hormone receptor-positive, human epidermal growth factor receptor 2-negative, node-positive, high-risk early breast cancer (EBC). Here, we report 5-year efficacy results from a prespecified overall survival (OS) interim analysis. In the intent-to-treat population, with a median follow-up of 54 months, the benefit of abemaciclib was sustained with hazard ratios of 0.680 (95% CI, 0.599 to 0.772) for IDFS and 0.675 (95% CI, 0.588 to 0.774) for DRFS. This persistence of abemaciclib benefit translated to continuous separation of the curves with a deepening in 5-year absolute improvement in IDFS and DRFS rates of 7.6% and 6.7%, respectively, compared with rates of 6% and 5.3% at 4 years and 4.8% and 4.1% at 3 years. With fewer deaths in the abemaciclib plus ET arm compared with the ET-alone arm (208 v 234), statistical significance was not reached for OS. No new safety signals were observed. In conclusion, abemaciclib plus ET continued to reduce the risk of developing invasive and distant disease recurrence beyond the completion of treatment. The increasing absolute improvement at 5 years is consistent with a carryover effect and further supports the use of abemaciclib in patients with high-risk EBC.

Background: The IMPROVE (IMproving Perinatal Mortality Review and Outcomes Via Education) eLearning, developed by the Stillbirth Centre of Research Excellence in partnership with the Perinatal Society of Australia and New Zealand was launched in December 2019. Based on the successful face-to-face program, the eLearning aims to increase availability and accessibility of high-quality online education to healthcare professionals providing care for families around the time of perinatal death, to improve the delivery of respectful and supportive clinical care and increase best practice investigation of perinatal deaths., Aims: To evaluate participants' reported learning outcomes (change in knowledge and confidence) and overall acceptability of the program., Methods: Pre- and post-eLearning in-built surveys were collected over two years (Dec. 2019-Nov. 2021), with a mix of Likert and polar questions. Pre- and post-eLearning differences in knowledge and confidence were assessed using McNemar's test. Subgroup analysis of overall acceptability by profession was assessed using Pearson's χ 2 ., Results: One thousand, three hundred and thirty-nine participants were included. The majority were midwives (80.2%, n = 1074). A significant improvement in knowledge and confidence was shown across all chapters (P < 0.01). The chapter showing the greatest improvement was perinatal mortality audit and classification (21.5% pre- and 89.2% post-education). Over 90% of respondents agreed the online education was relevant, helpful, acceptable, engaging. Importantly, 80.7% of participants considered they were likely to change some aspect of their clinical practice after the eLearning. There was no difference in responses to relevance and acceptability of the eLearning program by profession., Conclusions: The IMPROVE eLearning is an acceptable and engaging method of delivery for clinical education, with the potential to improve care and management of perinatal deaths., (© 2023 The Authors. Australian and New Zealand Journal of Obstetrics and Gynaecology published by John Wiley & Sons Australia, Ltd on behalf of Royal Australian and New Zealand College of Obstetricians and Gynaecologists.)

As the culture of silence that once surrounded cancer has gradually given way to greater public awareness, normative visions of what cancer survivorship should entail have proliferated. These visions emphasise positivity and perseverance in pursuit of cure. While these visions provide comfort to many, for people with metastatic cancer, the emphasis on cure can undermine their sense of belonging to the broader collective of people living with cancer. Drawing on semi-structured interviews with 38 Australian women living with metastatic breast cancer, we explore how incurable cancer inflects understandings of self and transforms interpersonal relationships. Extending ideas around biosociality and belonging, we explore the tenuousness of social bonds, revealing how (in)visibility, (in)authenticity and (in)validation circulate within the daily lives of women with metastatic breast cancer. We conceptualise accounts according to four social bonds: (1) threatened bonds where a relationship is strained by misunderstanding, (2) severed bonds where a relationship is ruptured due to misunderstanding, (3) attuned bonds whereby a relationship is based on shared identification and (4) flexible social bonds when a relationship is based on mutual understanding. More broadly, we illustrate the persistence of normative visions of cancer survivorship and their enduring effects on those whom such visions exclude., (© 2023 The Authors. Sociology of Health & Illness published by John Wiley & Sons Ltd on behalf of Foundation for the Sociology of Health & Illness.)

Purpose: To examine the effectiveness of professionally led support groups for people with advanced or metastatic cancer, and identify factors critical to implementation success within real-world settings., Methods: Databases (MEDLINE; PsychINFO; CINAHL) and grey literature were searched for empirical publications and evaluations. Articles were screened for eligibility and data systematically extracted, charted and summarised using a modified scoping review methodology. Implementation factors were mapped using Proctor's implementation framework and the Consolidated Framework for Implementation Research 2.0., Results: A total of 1691 publications were identified; 19 were eligible for inclusion (8 randomised controlled trials, 7 qualitative studies, 2 cohort studies, 2 mixed methods studies). Most (n=18) studies focused on tumour-specific support groups. Evidence supported professionally led support groups in reducing mood disturbances (n=5), distress (i.e. traumatic stress, depression) (n=4) and pain (n=2). Other benefits included social connectedness (n=6), addressing existential distress (n=5), information and knowledge (n=6), empowerment and sense of control (n=2), relationships with families (n=2) and communication with health professionals (n=2). Thirteen studies identified factors predicting successful adoption, implementation or sustainment, including acceptability (n=12; 63%), feasibility (n=6; 32%) and appropriateness (n=1; 5%). Key determinants of successful implementation included group leaders' skills/experience, mode of operation, travelling distance, group composition and membership and resourcing., Conclusions: Professionally led tumour-specific support groups demonstrate effectiveness in reducing mood disturbances, distress and pain among patients. Successful implementation hinges on factors such as leadership expertise, operational methods and resource allocation., Implications for Cancer Survivors: Professionally led support groups may fill an important gap in supportive care for people with advanced or metastatic cancer., (© 2024. The Author(s).)

Introduction: The COVID-19 pandemic caused rapid implementation of telehealth for melanoma follow-up care in Australia. This study explores Australian melanoma patients and clinicians' level of satisfaction with telehealth., Methods: A cross-sectional study was conducted across three specialist melanoma centres in Sydney, Australia. Melanoma patients (all stages) and clinicians completed mixed methods surveys seeking socio-demographic and clinical information and questionnaires to assess satisfaction with telehealth. Additionally, patients completed measures of quality of life, fear of cancer recurrence and trust in their oncologist. Patients and clinicians provided open-ended responses to qualitative questions about their perceptions of telehealth., Results: One hundred and fifteen patients and 13 clinicians responded to surveys. Telephone was used by 109 (95%) patients and 11 (85%) clinicians. Fifty-seven (50%) patients and nine (69%) clinicians preferred face-to-face consultations, 38 (33%) patients and 3 (23%) clinicians preferred a combination of face-to-face and telehealth consultations. Five (4%) patients and nil clinicians preferred telehealth consultations. Patients diagnosed with early-stage melanoma, using telehealth for the first time, who have lower trust in their oncologist, and having higher care delivery, communication and supportive care concerns were likely to report lower satisfaction with telehealth. Open-ended responses were consistent between patients and clinicians, who reported safety, convenience and improved access to care as major benefits, while identifying personal, interpersonal, clinical and system-related disadvantages., Discussion: While telehealth has been widely implemented during COVID-19, the benefits identified by patients and clinicians may extend past the pandemic. Telehealth may be considered for use in conjunction with face-to-face consultations to provide melanoma follow-up care., (© 2023 The Authors. Cancer Medicine published by John Wiley & Sons Ltd.)

Purpose: This study aimed to investigate the supportive care needs of Australian melanoma patients and their caregivers to form the basis for improving services., Methods: General and melanoma-related supportive care needs in melanoma patients were measured using the SCNS-SF34 and SCNS-M12 respectively, whereas caregivers completed the SCNS-P&C. Patients also completed the MCQ-28 and FCRI-9, with all participants completing the QLQ-C30, DASS-21, and questions measuring utilisation and preference for supportive health services. Multivariable stepwise logistic regression was used to identify variables associated with unmet needs in melanoma patients., Results: A total of 56 early-stage patients, 100 advanced-stage patients, and 37 caregivers participated. At least three-quarters ([Formula: see text] 75%) of each participant group reported at least one unmet need. Of the ten most reported unmet needs in each participant group, at least six ([Formula: see text] 60%) were related to psychological and emotional well-being, with access to a psychologist the most desired service (> 25%). Fear of cancer recurrence was equally prevalent in both patient groups at a level indicative of need for intervention. Advanced-stage patients reported significantly (p < 0.05) more unmet psychological, physical and daily living, and sexuality needs, and significantly (p < 0.05) worse functioning than early-stage patients., Conclusion: Australian melanoma patients and caregivers report substantial unmet supportive care needs, particularly regarding their psychological and emotional well-being. Psychological and emotional well-being services, such as access to a clinical psychologist or implementation of patient-reported outcome measures, should be incorporated into routine melanoma care to address unmet patient and caregiver needs and improve well-being., (© 2023. The Author(s).)

Purpose: Patients with cancer from racial and ethnic minorities, referred to as culturally and linguistically diverse (CALD) in Australia, are significantly under-represented in cancer clinical trials. We performed a national survey of the Australian cancer clinical trials workforce to determine barriers and preferred solutions to address this inequity., Methods: A 15-item online survey containing both closed- and open-ended purpose-designed questions was created using REDCap. The survey was emailed to members of the Clinical Oncology Society of Australia, Medical Oncology Group of Australia, and Australian cancer cooperative trial groups, and promoted via Twitter. Descriptive analyses summarized quantitative data, and free-text entries underwent thematic analysis with NVivo Version 12., Results: Ninety one respondents completed the survey-with representation across Australia. Eighty-seven percent were directly involved in clinical trial recruitment. Sixty-eight percent were clinicians. Seventy-four percent of respondents did not collect routine data on CALD patient enrollment to cancer clinical trials. Communication (eg, lack of translated materials) and opportunity-related barriers (eg, exclusionary trial protocols) were the most frequently perceived barriers to recruitment. Additionally, qualitative analysis indicated that insufficient consultation time and difficulties accessing interpreters for patients with non-English language preference were significant barriers. Trial navigators and a generic cancer trial pamphlet available in multiple languages were judged the most likely solutions to improve recruitment., Conclusion: This study articulates the Australian clinical trials workforce's perspective on current barriers and potential solutions to the under-representation of patients from CALD backgrounds on cancer clinical trials. The insights and solutions from this survey provide steps toward achieving equity in Australian cancer clinical trials.

Background: Parent carers of disabled children are at increased risk of physical and mental health problems. The Healthy Parent Carers (HPC) programme is a manualised peer-led group-based programme that aims to promote parent carer health and wellbeing. Previously, the programme had been delivered in person, with recruitment and delivery managed in a research context. This study explored implementation by two delivery partner organisations in the United Kingdom. Facilitator Training and Delivery Manuals were modified for online delivery using Zoom due to COVID-19., Methods: The study methodology utilised the Replicating Effective Programs framework. A series of stakeholder workshops informed the development of the Implementation Logic Model and an Implementation Package. After delivering the programme, delivery partner organisations and facilitators participated in a workshop to discuss experiences of implementing the programme. A wider group of stakeholders, including commissioners, Parent Carer Forums and charity organisations representatives and researchers subsequently met to consider the sustainability and potential barriers to delivering the programme outside the research context., Results: This study explored implementation by two delivery partner organisations in the United Kingdom that were able to recruit facilitators, who we trained, and they recruited participants and delivered the programme to parent carers in different localities using Zoom. The co-created Implementation Logic Model and Implementation Package were subsequently refined to enable the further roll-out of the programme with other delivery partner organisations., Conclusions: This study provides insight and understanding of how the HPC programme can be implemented sustainably outside of the research context. Further research will evaluate the effectiveness of the programme and refine the implementation processes., Patient and Public Contribution: Parent carers, delivery partner organisation staff and service commissioners were consulted on the design, delivery and reporting of the research., (© 2023 The Authors. Health Expectations published by John Wiley & Sons Ltd.)

Background: Breast neuroendocrine neoplasms represent a rare subtype of breast cancer which have not been well studied or characterised, particularly in the metastatic setting., Aim: To present clinicopathological characteristics, treatment and outcomes of a series of patients with metastatic neuroendocrine carcinoma of the breast and review the current literature., Methods: We performed a retrospective review to identify and describe patients with metastatic neuroendocrine carcinoma of the breast at our centre between 2011 and 2021. Medical records, pathology and imaging results were examined to evaluate the clinical and histopathological features as well as the treatment pathways and prognosis of these patients., Results: We present a series of seven female patients with metastatic neuroendocrine carcinoma of the breast, as defined by the World Health Organization classification, over a period of 10 years (2011-2021) from a single centre. Median age at diagnosis was 48 years (range 39-63). Six of seven tissue samples expressed synaptophysin and chromogranin and were also oestrogen and progesterone receptor positive; median Ki-67 index was 50% (range 20-90%). All seven patients had demonstrated avidity on 18 F-FDG PET imaging, and the six who underwent 68 Ga-DOTATATE PET all had significant avidity. Treatment modalities and sequencing varied, but all patients received chemotherapy during their disease course. Six patients received three or more lines of treatment. Median overall survival was 31.8 months (range 3.7-108.6). Median progression-free survival (PFS) with first-line therapy for metastatic disease was 5.8 months (range 1.8-37.8)., Conclusions: This series shows the use of multiple modalities in treating this disease, with different sequencing in different patients. Despite multiple modalities used in the first-line setting, first-line PFS remains short. Larger series and further molecular characterisation are required to aid clinicians in managing this condition and to guide optimal treatment sequencing to improve outcomes in this rare patient group., (© 2022 Royal Australasian College of Physicians.)

Background: Breast reconstruction (BR) improves women's health-related quality of life (HRQOL) following mastectomy for breast cancer, yet factors contributing to improved HRQOL remain unclear. This study aimed to explore the overall impact of mastectomy with or without BR on participants' perceptions of HRQOL over time in a cohort of women with high-risk breast cancer; to examine differences in mean HRQOL scores between immediate BR, delayed BR and no BR groups; to assess the influence of patient characteristics potentially associated with HRQOL scores; and to determine the feasibility of long-term collection of patient-reported outcome measures in clinical settings., Methods: A prospective, longitudinal study of 100 women with high-risk breast cancer who underwent mastectomy with or without breast reconstruction and were likely to require post-mastectomy radiotherapy. Four validated patient-reported questionnaires, comprising 21 outcome measures relating to HRQOL, administered at baseline and up to 4 years post-mastectomy. Demographic, clinical and surgical data extracted from patient medical records., Results: Consistently significant declines in perceptions of future health and arm symptoms, consistently significant improvements in treatment side effects, breast symptoms and fatigue, as well as significant improvements, compared to baseline, in social functioning and financial difficulties at 48 months. No significant differences in mean HRQOL scores between women given a choice of reconstructive options., Conclusion: Similar trajectories of HRQOL scores were found in women with high-risk breast cancer who were offered a choice of BR. Informed choice may be an independent contributing factor in long-term maintenance of most HRQOL indicators at their pre-mastectomy levels., Competing Interests: Declaration of competing interest The authors have no relevant financial or non-financial interests to disclose., (Copyright © 2023 The Authors. Published by Elsevier Ltd.. All rights reserved.)

Introduction: Infants with low birthweight (LBW, birthweight <2500 g) have increased in many high-resource countries over the past two decades. This study aimed to investigate the time trends, projections, and spatial distribution of LBW in Australia, 2009-2030., Methods: We used standard aggregate data on 3 346 808 births from 2009 to 2019 from Australia's National Perinatal Data Collection. Bayesian linear regression model was used to estimate the trends in the prevalence of LBW in Australia., Results: Wefound that the prevalence of LBW was 6.18% in 2009, which has increased to 6.64% in 2019 (average annual rate of change, AARC = +0.76%). If the national trend remains the same, the projected prevalence of LBW in Australia will increase to 7.34% (95% uncertainty interval, UI = 6.99, 7.68) in 2030. Observing AARC across different subpopulations, the trend of LBW was stable among Indigenous mothers, whereas it increased among non-Indigenous mothers (AARC = +0.81%). There is also an increase among the most disadvantaged mothers (AARC = +1.08%), birthing people in either of two extreme age groups (AARC = +1.99% and +1.53% for <20 years and ≥40 years, respectively), and mothers who smoked during pregnancy (AARC = +1.52%). Spatiotemporal maps showed that some of the Statistical Area level 3 (SA3) in Northern Territory and Queensland had consistently higher prevalence for LBW than the national average from 2014 to 2019., Conclusion: Overall, the prevalence of LBW has increased in Australia during 2009-2019; however, the trends vary across different subpopulations. If trends persist, Australia will not achieve the Sustainable Development Goals (SDGs) target of a 30% reduction in LBW by 2030. Centering and supporting the most vulnerable subpopulations is vital to progress the SDGs and improves perinatal and infant health in Australia., (© 2023 The Authors. Birth published by Wiley Periodicals LLC.)

Lacosamide is a newer antiepileptic medication used in refractory neonatal seizures with limited safety and efficacy data. This case series spans 4 years and includes 38 neonates cared for in the neonatal, pediatric, and cardiovascular intensive care units, who received lacosamide for refractory seizures. Because lacosamide affects atrioventricular node function in adults, among other metrics, electrocardiogram (ECG) changes were monitored closely in these neonates. Within this cohort, 2 neonates were found to have atrial bigeminy on ECG and telemetry. Otherwise, lacosamide was generally well tolerated with sleepiness being the most common symptom noted. This case series reports data on the tolerability of lacosamide and emphasizes the importance of monitoring key cardiac intervals with ECG before and after the use of lacosamide in this population.