INTRODUCTION: Cancer-related cognitive impairment (CRCI) is a distressing and disabling side-effect of cancer treatments affecting up to 75% of patients. For some patients, their cognitive impairment may be transient, but for a subgroup, these symptoms can be long-standing and have a major impact on the quality of life. This paper describes the protocol for a study: (1) to assess the feasibility of collecting longitudinal data on cognition via self-report, neuropsychological testing, peripheral markers of inflammation and neuroimaging and (2) to explore and describe patterns of cancer-related cognitive impairment over the course of treatment and recovery in patients with newly diagnosed, aggressive lymphoma undergoing standard therapy with curative intent. METHODS AND ANALYSIS: This is a prospective, longitudinal, feasibility study in which 30 newly diagnosed, treatment-naive patients with aggressive lymphoma will be recruited over a 12-month period. Patients will complete comprehensive assessments at three time points: baseline (time 1, pre-treatment) and two post-baseline follow-up assessments (time 2, mid-treatment and time 3, 6-8 weeks post-treatment completion). All patients will be assessed for self-reported cognitive difficulties and objective cognitive function using Stroop Colour and Word, Trail Making Test Part A and B, Hopkins Verbal Learning Test-Revised, Controlled Oral Word Association and Digit Span. Blood cell-based inflammatory markers and neuroimaging including a positron emission tomography (PET) with 18F-labelled fluoro-2-deoxyglucose (18F-FDG) and CT (18F-FDG-PET/CT) and a MRI will explore potential inflammatory and neuroanatomical or functional mechanisms and biomarkers related to CRCI. The primary intent of analysis will be to assess the feasibility of collecting longitudinal data on cognition using subjective reports and objective tasks from patients during treatment and recovery for lymphoma. These data will inform the design of a larger-scale investigation into the patterns of cognitive change over the course of treatment and recovery, adding to an underexplored area of cancer survivorship research. ETHICS AND DISSEMINATION: Ethical approval has been granted by Austin Health Human Rights Ethics Committee (HREC) in Victoria Australia. Peer reviewed publications and conference presentations will report the findings of this novel study. TRIAL REGISTRATION NUMBER: Australian New Zealand Clinical Trials Registry (ACTRN12619001649101).

OBJECTIVES: It is unclear how newer methods of respiratory support for infants born extremely preterm (EP; 22-27 weeks gestation) have affected in-hospital sequelae. We aimed to determine changes in respiratory support, survival and morbidity in EP infants since the early 1990s. DESIGN: Prospective longitudinal cohort study. SETTING: The State of Victoria, Australia. PARTICIPANTS: All EP births offered intensive care in four discrete eras (1991-1992 (24 months): n=332, 1997 (12 months): n=190, 2005 (12 months): n=229, and April 2016-March 2017 (12 months): n=250). OUTCOME MEASURES: Consumption of respiratory support, survival and morbidity to discharge home. Cost-effectiveness ratios describing the average additional days of respiratory support associated per additional survivor were calculated. RESULTS: Median duration of any respiratory support increased from 22 days (1991-1992) to 66 days (2016-2017). The increase occurred in non-invasive respiratory support (2 days (1991-1992) to 51 days (2016-2017)), with high-flow nasal cannulae, unavailable in earlier cohorts, comprising almost one-half of the duration in 2016-2017. Survival to discharge home increased (68% (1991-1992) to 87% (2016-2017)). Cystic periventricular leukomalacia decreased (6.3% (1991-1992) to 1.2% (2016-2017)), whereas retinopathy of prematurity requiring treatment increased (4.0% (1991-1992) to 10.0% (2016-2017)). The average additional costs associated with one additional infant surviving in 2016-2017 were 200 (95% CI 150 to 297) days, 326 (183 to 1127) days and 130 (70 to 267) days compared with 1991-1992, 1997 and 2005, respectively. CONCLUSIONS: Consumption of resources for respiratory support has escalated with improved survival over time. Cystic periventricular leukomalacia reduced in incidence but retinopathy of prematurity requiring treatment increased. How these changes translate into long-term respiratory or neurological function remains to be determined.

Congenital heart disease (CHD) is the most common birth defect. Little is known of the impact of having a sibling with CHD. Available literature documents negative impact of having a sibling with other chronic conditions. This literature review considers empirical evidence investigating the impact of having a sibling with CHD. Twelve databases were searched, and 202 articles retrieved. Eleven articles met the inclusion criteria and were subject to data extraction, quality appraisal, and narrative synthesis. Three themes emerged: changes in normal life, impact on siblings, and factors affecting the extent of impact on siblings. Only one intervention study was identified, 5 of 10 studies were conducted over 20 years ago, and only 4 studies included children as participants. Evidence suggests siblings of children with CHD experience adverse life changes which lead to negative impacts in several domains. Evidence is inconclusive regarding mitigating factors of these impacts. Further research is needed to understand the experiences of being a sibling of a child with CHD.

This article discusses initiatives aimed at preventing and reducing 'coercive practices' in mental health and community settings worldwide, including in hospitals in high-income countries, and in family homes and rural communities in low- and middle-income countries. The article provides a scoping review of the current state of English-language empirical research. It identifies several promising opportunities for improving responses that promote support based on individuals' rights, will and preferences. It also points out several gaps in research and practice (including, importantly, a gap in reviews of non-English-language studies). Overall, many studies suggest that efforts to prevent and reduce coercion appear to be effective. However, no jurisdiction appears to have combined the full suite of laws, policies and practices which are available, and which taken together might further the goal of eliminating coercion.

Background: Intensive care nurse wellbeing is essential to a healthy healthcare workforce. Enhanced wellbeing has widespread benefits for workers. Bibliometrics enables quantitative analysis of bourgeoning online data. Here, a new model is developed and applied to explore empirical knowledge underpinning wellbeing and intensive care nurse wellbeing in terms of size and impact, disciplinary reach, and semantics. Methods: Mixed methods bibliometric study. Firstly, a new model coined 'iAnalysis' was developed for the analysis of published data. Secondly, iAnalysis was applied in two studies to examine wellbeing and ICU nurse wellbeing. Study one explored data from a title search with search terms [wellbeing OR well-being], identifying 17,543 records with bibliographic data. This dataset included 20,526 keywords. Of the identified records, 10,715 full-text manuscripts were retrieved. Study two explored data from a topic search with search terms [(intensive OR critical) AND (nurs*) AND (wellbeing OR well-being)], identifying 383 records with bibliographic data. This dataset included 1223 author keywords. Of the identified records, 328 full-text manuscripts were retrieved. Results: Once data were collected, for size and impact, WoS Clarivate Analytics™ and RStudio™ were used to explore publication dates, frequencies, and citation performance. For disciplinary reach, RStudio™ (with the Bibliometrics™ package & Vosviewer™ plugin) was used to explore the records in terms of country of publication, journal presence, and mapping of authors. For semantics, once the bibliographic data was imported to RStudio™ (with the Bibliometrics™ package & Vosviewer™ plugin) keyword co-occurrences were identified and visualised. Full-text manuscripts were imported to NVivo™ to explore word frequencies of both the keywords and full-text manuscripts using the word frequency search. For both studies, records were predominantly published in the past 5 years, in English language, and from USA. The highest keyword co-occurrence for study one was "health and well-being", and for study two, "family and model". Conclusions: Terms commonly associated with 'illbeing', as opposed to 'wellbeing', were highly prevalent in both study datasets, but more so in intensive care nurse wellbeing data. Intensive care nurse wellbeing was virtually absent in this literature. The iAnalysis model provided a practice-friendly tool to explore a large source of online published literature.

INTRODUCTION: Infants born extremely preterm (EP, <28 weeks' gestation) or with extremely low birth weight (ELBW,<1000 g) in the era when surfactant has been available clinically are at high risk of health and developmental problems in childhood and adolescence. However, how their health and well-being may be affected in adulthood is not well known. This study aims to compare between EP/ELBW and normal birthweight (NBW) controls: (1) physical health, mental health and socioemotional functioning at 25 years of age and (2) trajectories of these outcomes from childhood to adulthood. In addition, this study aims to identify risk factors in pregnancy, infancy, childhood and adolescence for poor physical health and well-being in EP/ELBW young adults. METHODS AND ANALYSIS: The Victorian Infant Collaborative Study (VICS) is a prospective geographical cohort of all EP/ELBW survivors to 18 years of age born in the State of Victoria, Australia, from 1 January 1991 to 31 December 1992 (n=297) and contemporaneous term-born/NBW controls (n=262). Participants were recruited at birth and followed up at 2, 5, 8 and 18 years. This 25-year follow-up includes assessments of physical health (cardiovascular, respiratory and musculoskeletal), mental health and socioemotional functioning. Outcomes will be compared between the birth groups using linear and logistic regression, fitted using generalised estimating equations (GEEs). Trajectories of health outcomes from early childhood will be compared between the birth groups using linear mixed-effects models. Risk factors for adult outcomes will be assessed using linear and logistic regression (fitted using GEEs). ETHICS AND DISSEMINATION: This study was approved by the Human Research Ethics Committees of the Royal Women's Hospital, Mercy Hospital for Women, Monash Medical Centre and the Royal Children's Hospital, Melbourne. Study outcomes will be disseminated through conference presentations, peer-reviewed publications, the internet and social media.

INTRODUCTION: Half of all hypertensive individuals have inadequately-controlled BP because monitoring methods are ineffective. This single centre study examined consecutive subjects undergoing 24 hour BP measurements for clinic and ambulatory BP levels, and for end-organ damage (retinal microvascular abnormalities and left ventricular hypertrophy, LVH, > 1.1 cm). Retinal images were graded for microvascular retinopathy (Wong and Mitchell classification), and vessel calibre using a semiautomated method. Features were compared using chi-squared, Fisher's exact or the student's t test. METHODS: One hundred and thirty-one individuals (59 male, 45.0%, mean age 61.7 ± 14.5 years) were studied. Ninety-nine (76.2%) had a clinic BP ≥ 140/90 mm Hg, 84 (64.6%) had a mean awake systolic BP ≥ 135 mm Hg, 100 (76.9%) had a mean sleeping systolic BP ≥ 120 mm Hg, and 100 (76.2%) had abnormal nocturnal BP dipping patterns. Sixty-nine individuals had undergone echocardiography and 23 (33.3%) had LVH. RESULTS: All participants had a mild (88.5%) or moderate (11.5%) microvascular retinopathy. Moderate microvascular retinopathy was found in 86.7% of those with a mean awake systolic BP ≥135 mm Hg (p = 0.058) but was not associated with other abnormal BP measurements, abnormal dipping patterns or LVH. However retinal arteriole calibre was reduced in subjects with a mean 24 hour awake systolic BP ≥ 135 mm Hg (p = 0.05). Retinal arteriole calibre was smaller in subjects with LVH (128.1 ± 13.5 μm compared with 137.6 ± 14.1 μm in normals, p = 0.014). Venular calibre was also less in subjects with LVH (185.4 ± 24.6 μm compared with 203.0 ± 27.2 μm in normals, p = 0.016). Arteriole narrowing predicted an increased risk of LVH (AUC 0.69, 95%CI 0.55 to 0.83) that was comparable with 24 hour systolic BP ≥130 mm Hg (AUC 0.68, 95%CI 0.53 to 0.82) and mean awake systolic BP ≥135 mm Hg (AUC 0.68, 95%CI 0.54 to 0.83). CONCLUSIONS: This study suggests that retinal arteriole narrowing may be equally accurate in predicting LVH as any clinic or ambulatory BP measurement. The convenience and accuracy of microvascular calibre measurement mean that it should be investigated further for a role in routine hypertension assessment and monitoring.

BACKGROUND: Patient participation in care is a fundamental element of safe and high-quality healthcare with the potential to enhance health outcomes and improve patient satisfaction. OBJECTIVES: To test the efficacy of a clinician-facilitated, bedside multimedia (MyStay) intervention designed to support patient participation in their recovery after total knee replacement surgery. The primary outcome was patients' reported worst pain intensity on postoperative day 3. Secondary outcomes were patient activation, length of hospital stay, knee function and satisfaction with care. METHODS: Unmasked, cluster randomised, four-period cross-over trial with a simultaneous process evaluation within in a large private, not-for-profit, metropolitan teaching hospital. Statistical analyses used linear mixed models with random effects for wards, cohorts within wards and patients within cohorts and fixed effects for treatment and period. RESULTS: 241 patients were recruited between March 2014 and June 2015. Patients were admitted to intervention (104) or control (137) clusters. Intervention group patients reported significantly lower mean pain intensity scores on postoperative day 3 (6.1 vs 7.1, 95% CI -1.94 to -0.08, p=0.04). The percentages of patients who reported severe pain (score ≥7) were 43.7% and 64.2% in the intervention and control groups, respectively (χ2 9.89, p=0.002; generalised linear mixed model Wald test, p=0.05). Intervention group patients on average stayed in hospital one less day (5.3 vs 6.3, 95% CI 0.05 to 1.94, p=0.04), reported higher activation (45.1% vs 27.1% at level 4 activation) (p=0.04) and higher overall satisfaction with care (9.3 vs 8.6, 95% CI 1.09 to 0.219, p=0.01), and were more likely to refer family or friends to the health service (9.3 vs 8.7, 95% CI 1.07 to 0.13, p=0.02). CONCLUSION: The clinician-facilitated, MyStay bedside multimedia intervention enhanced patients' activation and participation in their care after surgery; pain intensity and length of stay in hospital were reduced and patients were more satisfied with their care. TRIAL REGISTRATION: ACTRN12614000340639 (http://www.anzctr.org.au/default.aspx).

OBJECTIVE: To co-design and test the acceptability of a peer-led web-based resource (PLWR) for cancer carers to provide practical and emotional advice on common issues. METHODS: A six-step co-design model informed PLWR development. Content was developed through three cancer carer workshops and monthly meetings with an expert advisory team (n = 12). User-testing was conducted via web-based survey and telephone interview. Descriptive statistics and thematic analysis were utilised. Google analytics explored site visits, commonly used components, and time spent using the PLWR. RESULTS: The PLWR was developed to deliver cancer carer information tailored to each stage of the illness trajectory regardless of cancer type, in the form of videoed personal experiences. From November to May 2018, there were 2789 unique visits to the PLWR with 743 returners. The majority of time was spent on the full unclipped peer stories (414 views), and diagnosis-specific information (159 views), with less time spent on bereavement, cancer treatment, or self-care (120 views each). Fifty-five individuals completed the resource evaluation, with 10 participating in telephone interviews. Fifty-four carers rated the resource as excellent, useful, and easy to use. The web-based videos were regarded as convenient as and less burdensome than written information. The resource provided relevant information, potentially reducing isolation and uncertainty. CONCLUSION: The content and design of the PLWR appear acceptable to cancer carers. The co-design model is an effective way to develop appropriate information for service users and could be utilised as a framework for development of other interventions in a variety of disease groups.

BACKGROUND: Deep Brain Stimulation (DBS) is an emerging and potentially powerful biological treatment for severe Obsessive-Compulsive Disorder (OCD), but the wider impact of the intervention and the sometimes dramatic reduction in symptoms need greater attention in research and practice. The aim of this case study is to explore the subjective experience of preparing for and undergoing DBS as a treatment for severe and treatment-refractory OCD and the experience of the impact of the treatment. METHODS: This study of subjective experience before and after DBS is based on narrative analysis of two in-depth interviews conducted in November 2014 (1 year after DBS surgery) with a 30-year-old man and his father, utilizing Consolidated Criteria for Reporting Qualitative Studies (COREQ) criteria. RESULTS: The parallel stories show how OCD posed severe challenges to identity and social milestones, with profound positive and negative impact on the person and family. Yet symptom remission was accompanied by expanded horizons, but also by uncertainty and intense distress associated with the changed identity. DISCUSSION: The concept of 'burden of normality' is discussed, in light of a treatment experience with DBS for OCD that gives rise to a new array of life challenges and opportunities, with implications for clinical care. CONCLUSIONS: The concept of burden of normality has, thus far, not extended to evaluations of people who have had DBS for severe OCD and that of their lived experience and recovery trajectory thereafter. This concept highlights that there is work to be done on expectations of normal living and on the transitioning self-concept, in the post-surgical period.

INTRODUCTION: Cancer is often considered a chronic disease, and most people with cancer have a caregiver, often a family member or friend who provides a significant amount of care during the illness trajectory. Caregivers are frequently in need of support, and a range of interventions have been trialled to improve outcomes. Consensus for optimal ways to support caregivers is not known. The aim of this protocol paper is to describe procedures for a modified Delphi study to explore expert consensus about important factors when developing caregiver interventions. METHODS AND ANALYSIS: Online modified Delphi methodology will be used to establish consensus for important caregiver intervention factors incorporating the Patient problem, Intervention, Comparison and Outcome framework. Round 1 will comprise a free-text questionnaire and invite the panel to contribute factors they deem important in the development and evaluation of caregiver interventions. Round 2 is designed to determine preliminary consensus of the importance of factors generated in round 1. The panel will be asked to rate each factor using a 4-point Likert-type scale. The option for panellists to state reasoning for their rating will be provided. Descriptive statistics (median scores and IQR) will be calculated to determine each item's relative importance. Levels of consensus will be assessed based on a predefined consensus rating matrix. In round 3, factors will be recirculated including aggregate group responses (statistics and comment summaries) and panellists' own round 2 scores. Panellists will be invited to reconsider their judgements and resubmit ratings using the same rating system as in round 2. This will result in priority lists based on the panel's total rating scores. ETHICS AND DISSEMINATION: Ethics for this study has been gained from the Deakin University Human Ethics Advisory Group. It is anticipated that the results will be published in peer-reviewed journals and presented in a variety of forums.