Factors influencing patient decision-making to undergo shoulder arthroplasty.

Aims: Shoulder arthroplasty is effective in the management of end-stage glenohumeral joint arthritis. However, it is major surgery and patients must balance multiple factors when considering the procedure. An understanding of patients' decision-making processes may facilitate greater support of those considering shoulder arthroplasty and inform the outcomes of future research. Methods: Participants were recruited from waiting lists of three consultant upper limb surgeons across two NHS hospitals. Semi-structured interviews were conducted with 12 participants who were awaiting elective shoulder arthroplasty. Transcribed interviews were analyzed using a grounded theory approach. Systematic coding was performed; initial codes were categorized and further developed into summary narratives through a process of discussion and refinement. Data collection and analyses continued until thematic saturation was reached. Results: Two overall categories emerged: the motivations to consider surgery, and the information participants used to inform their decision-making. Motivations were, broadly, the relief of pain and the opportunity to get on with life and regain independence. When participants' symptoms and restrictions prevented them enjoying life to a sufficient extent, this provided the motivation to proceed with surgery. Younger participants tended to focus on maintaining employment and recreational activities, and older patients were eager to make the most of their remaining lifetime. Participants gathered information from a range of sources and were keen to optimize their recovery where possible. An important factor for participants was whether they trusted their surgeon and were prepared to delegate responsibility for elements of their care. Conclusion: Relief of pain and the opportunity to get on with life were the primary reasons to undergo shoulder arthroplasty. Participants highlighted the importance of the patient-surgeon relationship and the need for accurate information in an accessible format which is relevant to people of different ages and functional demands.

Conserving ecosystem integrity: Ecological theory as a guide for marine protected area monitoring.

Global policies increasingly focus on the importance of maintaining or improving the integrity of ecosystems, but defining, assessing, and monitoring integrity in marine protected areas (MPAs) remains a challenge. In this paper, we conceptualized ecological integrity along dimensions of heterogeneity and stability containing seven components: physical structure, diversity, function, persistence, resistance, resilience, and natural variability. Through a structured literature search, we identified indicators and metrics used for quantifying ecosystem status components in the marine environment, then reviewed MPA management plans worldwide for inclusion of these components. We evaluated 202 papers applying 83 ecological indicators built from 72 metrics. Ecosystem components were most comprehensively addressed by metrics of taxa presence, organisms count, and area occupied by benthic organisms, and community structure, biomass, and percent cover indicators. Of the 557 MPA management plans we reviewed globally, 93% used at least one ecosystem status term or its synonym in an ecologically relevant context, but 39% did not address any components of stability. In particular, resistance was mentioned in only 1% of management plans, but in some cases it may be inferred from indicators and metrics used to track the best addressed component in management plans, diversity. Plans for MPAs with both an ecological/biological purpose and a research and education purpose contained ecosystem status terms more frequently than other plans, suggesting that engagement with the scientific community may have improved the application of these terms. An improved understanding of how to operationalize and measure ecological integrity can help MPA monitoring and management.

Joint ABS-UKCGG-CanGene-CanVar consensus regarding the use of CanRisk in clinical practice.

BACKGROUND: The CanRisk tool, which operationalises the Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA) is used by Clinical Geneticists, Genetic Counsellors, Breast Oncologists, Surgeons and Family History Nurses for breast cancer risk assessments both nationally and internationally. There are currently no guidelines with respect to the day-to-day clinical application of CanRisk and differing inputs to the model can result in different recommendations for practice. METHODS: To address this gap, the UK Cancer Genetics Group in collaboration with the Association of Breast Surgery and the CanGene-CanVar programme held a workshop on 16th of May 2023, with the aim of establishing best practice guidelines. RESULTS: Using a pre-workshop survey followed by structured discussion and in-meeting polling, we achieved consensus for UK best practice in use of CanRisk in making recommendations for breast cancer surveillance, eligibility for genetic testing and the input of available information to undertake an individualised risk assessment. CONCLUSIONS: Whilst consensus recommendations were achieved, the meeting highlighted some of the barriers limiting the use of CanRisk in clinical practice and identified areas that require further work and collaboration with relevant national bodies and policy makers to incorporate wider use of CanRisk into routine breast cancer risk assessments.

Acceptability of magnetic resonance imaging for prostate cancer diagnosis with patients and GPs: a qualitative interview study.

BACKGROUND: Magnetic resonance imaging (MRI) of the prostate is a new, more accurate, non-invasive test for prostate cancer diagnosis. AIM: To understand the acceptability of MRI for patients and GPs for prostate cancer diagnosis. DESIGN AND SETTING: Qualitative study of men who had undergone a prostate MRI for possible prostate cancer, and GPs who had referred at least one man for possible prostate cancer in the previous 12 months in West London and Devon. METHOD: Semi-structured interviews, conducted in person or via telephone, were audio-recorded and transcribed verbatim. Deductive thematic analysis was undertaken using Sekhon's Theoretical Framework of Acceptability, retrospectively for patients and prospectively for GPs. RESULTS: Twenty-two men (12 from Devon, age range 47-80 years), two patients' partners, and 10 GPs (6 female, age range 36-55 years) were interviewed. Prostate MRI was broadly acceptable for most patient participants, and they reported that it was not a significant undertaking to complete the scan. GPs were more varied in their views on prostate MRI, with a broad spectrum of knowledge and understanding of prostate MRI. Some GPs expressed concerns about additional clinical responsibility and local availability of MRI if direct access to prostate MRI in primary care were to be introduced. CONCLUSION: Prostate MRI appears to be acceptable to patients. Some differences were found between patients in London and Devon, mainly around burden of testing and opportunity costs. Further exploration of GPs' knowledge and understanding of prostate MRI could inform future initiatives to widen access to diagnostic testing in primary care.

Effects of colour-coded compartmentalised syringe trays on anaesthetic drug error detection under cognitive load.

BACKGROUND: Anaesthetic drug administration is complex, and typical clinical environments can entail significant cognitive load. Colour-coded anaesthetic drug trays have shown promising results for error identification and reducing cognitive load. METHODS: We used experimental psychology methods to test the potential benefits of colour-coded compartmentalised trays compared with conventional trays in a simulated visual search task. Effects of cognitive load were also explored through an accompanying working memory-based task. We hypothesised that colour-coded compartmentalised trays would improve drug-detection error, reduce search time, and reduce cognitive load. This comprised a cognitive load memory task presented alongside a visual search task to detect drug errors. RESULTS: All 53 participants completed 36 trials, which were counterbalanced across the two tray types and 18 different vignettes. There were 16 error-present and 20 error-absent trials, with 18 trials presented for each preloaded tray type. Syringe errors were detected more often in the colour-coded trays than in the conventional trays (91% vs 83%, respectively; P=0.006). In signal detection analysis, colour-coded trays resulted in more sensitivity to the error signal (2.28 vs 1.50, respectively; P<0.001). Confidence in response accuracy correlated more strongly with task performance for the colour-coded tray condition, indicating improved metacognitive sensitivity to task performance (r=0.696 vs r=0.447). CONCLUSIONS: Colour coding and compartmentalisation enhanced visual search efficacy of drug trays. This is further evidence that introducing standardised colour-coded trays into operating theatres and procedural suites would add an additional layer of safety for anaesthetic procedures.

Treating insomnia in people who are incarcerated: a feasibility study of a multicomponent treatment pathway.

Around 60% of people who are incarcerated have insomnia; 6-10 times more prevalent than the general population. Yet, there is no standardized, evidence-based approach to insomnia treatment in prison. We assessed the feasibility of a treatment pathway for insomnia in a high-secure prison to inform a future randomized controlled trial (RCT) and initial efficacy data for sleep and mental health outcomes. We used a within-participants pre-post design. The stepped-care pathway included: self-management with peer support, environmental aids, and cognitive behavioral therapy for insomnia (CBTi). Assessment measures for insomnia, well-being, mood, anxiety, suicidality, overall health, sleepiness, fatigue, and cognitive functioning were administered at baseline and pathway exit. Feasibility criteria included eligibility to participate, CBTi uptake, and assessment completion. Forty-two adult males who are incarcerated were approached of which 95.2% were eligible. Of those deemed eligible, most participated (36/40, 90.0%). Most who completed baseline completed post-assessments (28/36, 77.8%) and of these, most showed improvements in their subjective sleep (27/28, 96.4%). Large reductions were found from pre- to posttreatment in insomnia severity (d = -1.81, 95% CI: 8.3 to 12.9) and 57.0% reported no clinically significant insomnia symptoms at post-assessment. There was no overall change in actigraphy-measured sleep. Large treatment benefits were found for depression, anxiety, well-being, and cognitive functioning, with a medium benefit on suicidal ideation. The treatment pathway for insomnia in prison was feasible and may be an effective treatment for insomnia in people who are incarcerated, with additional promising benefits for mental health. A pragmatic RCT across different prison populations is warranted. This paper is part of the Sleep and Circadian Health in the Justice System Collection.

The maluma/takete effect is late: No longitudinal evidence for shape sound symbolism in the first year.

The maluma/takete effect refers to an association between certain language sounds (e.g., /m/ and /o/) and round shapes, and other language sounds (e.g., /t/ and /i/) and spiky shapes. This is an example of sound symbolism and stands in opposition to arbitrariness of language. It is still unknown when sensitivity to sound symbolism emerges. In the present series of studies, we first confirmed that the classic maluma/takete effect would be observed in adults using our novel 3-D object stimuli (Experiments 1a and 1b). We then conducted the first longitudinal test of the maluma/takete effect, testing infants at 4-, 8- and 12-months of age (Experiment 2). Sensitivity to sound symbolism was measured with a looking time preference task, in which infants were shown images of a round and a spiky 3-D object while hearing either a round- or spiky-sounding nonword. We did not detect a significant difference in looking time based on nonword type. We also collected a series of individual difference measures including measures of vocabulary, movement ability and babbling. Analyses of these measures revealed that 12-month olds who babbled more showed a greater sensitivity to sound symbolism. Finally, in Experiment 3, we had parents take home round or spiky 3-D printed objects, to present to 7- to 8-month-old infants paired with either congruent or incongruent nonwords. This language experience had no effect on subsequent measures of sound symbolism sensitivity. Taken together these studies demonstrate that sound symbolism is elusive in the first year, and shed light on the mechanisms that may contribute to its eventual emergence.

Improving personalised care and support planning for people living with treatable-but-not-curable cancer.

People living with treatable-but-not-curable (TbnC) cancer encounter cancer-related needs. While the NHS long-term plan commits to offering a Holistic Needs Assessment (HNA) and care plan to all people diagnosed with cancer, the content, delivery and timing of this intervention differs across practice. Understanding how people make sense of their cancer experience can support personalised care. A conceptual framework based on personal narratives of living with and beyond cancer (across different cancer types and all stages of the disease trajectory), identified three interlinked themes: Adversity, Restoration and Compatibility, resulting in the ARC framework.Our aim was to use the ARC framework to underpin the HNA to improve the experience of personalised care and support planning for people living with TbnC cancer. We used clinical work experience to operationalise the ARC framework and develop the intervention, called the ARC HNA, and service-level structure, called the ARC clinic. We sought expert input on the proposed content and structure from patients and clinicians through involvement and engagement activities. Delivered alongside standard care, the ARC HNA was piloted with patients on the TbnC cancer (myeloma and metastatic breast, prostate or lung) pathway, who were 6-24 months into their treatment. Iterations were made to the content, delivery and timing of the intervention based on user feedback.Fifty-one patients received the intervention. An average of 12 new concerns were identified per patient, and 96% of patients achieved at least one of their goals. Patients valued the space for reflection and follow-up, and clinicians valued the collaborative approach to meeting patients' supportive care needs. Compared with routine initial HNA and care plan completion rates of 13%, ARC clinic achieved 90% with all care plans shared with general practitioners. The ARC clinic adopts a novel and proactive approach to delivering HNAs and care plans in a meaningful and personalised way.

Exploring the barriers to and facilitators of implementing CanRisk in primary care: a qualitative thematic framework analysis.

BACKGROUND: The CanRisk tool enables the collection of risk factor information and calculation of estimated future breast cancer risks based on the multifactorial Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm (BOADICEA) model. Despite BOADICEA being recommended in National Institute for Health and Care Excellence (NICE) guidelines and CanRisk being freely available for use, the CanRisk tool has not yet been widely implemented in primary care. AIM: To explore the barriers to and facilitators of the implementation of the CanRisk tool in primary care. DESIGN AND SETTING: A multi-methods study was conducted with primary care practitioners (PCPs) in the East of England. METHOD: Participants used the CanRisk tool to complete two vignette-based case studies; semi-structured interviews gained feedback about the tool; and questionnaires collected demographic details and information about the structural characteristics of the practices. RESULTS: Sixteen PCPs (eight GPs and eight nurses) completed the study. The main barriers to implementation included: time needed to complete the tool; competing priorities; IT infrastructure; and PCPs' lack of confidence and knowledge to use the tool. Main facilitators included: easy navigation of the tool; its potential clinical impact; and the increasing availability of and expectation to use risk prediction tools. CONCLUSION: There is now a greater understanding of the barriers and facilitators that exist when using CanRisk in primary care. The study has highlighted that future implementation activities should focus on reducing the time needed to complete a CanRisk calculation, integrating the CanRisk tool into existing IT infrastructure, and identifying appropriate contexts in which to conduct a CanRisk calculation. PCPs may also benefit from information about cancer risk assessment and CanRisk-specific training.

Can we do better? A qualitative study in the East of England investigating patient experience and acceptability of using the faecal immunochemical test in primary care.

OBJECTIVES: The faecal immunochemical test (FIT) is increasingly used in UK primary care to triage patients presenting with symptoms and at different levels of colorectal cancer risk. Evidence is scarce on patients' views of using FIT in this context. We aimed to explore patients' care experience and acceptability of using FIT in primary care. DESIGN: A qualitative semi-structured interview study. Interviews were conducted via Zoom between April and October 2020. Transcribed recordings were analysed using framework analysis. SETTING: East of England general practices. PARTICIPANTS: Consenting patients (aged ≥40 years) who presented in primary care with possible symptoms of colorectal cancer, and for whom a FIT was requested, were recruited to the FIT-East study. Participants were purposively sampled for this qualitative substudy based on age, gender and FIT result. RESULTS: 44 participants were interviewed with a mean age 61 years, and 25 (57%) being men: 8 (18%) received a positive FIT result. Three themes and seven subthemes were identified. Participants' familiarity with similar tests and perceived risk of cancer influenced test experience and acceptability. All participants were happy to do the FIT themselves and to recommend it to others. Most participants reported that the test was straightforward, although some considered it may be a challenge to others. However, test explanation by healthcare professionals was often limited. Furthermore, while some participants received their results quickly, many did not receive them at all with the common assumption that 'no news is good news'. For those with a negative result and persisting symptoms, there was uncertainty about any next steps. CONCLUSIONS: While FIT is acceptable to patients, elements of communication with patients by the healthcare system show potential for improvement. We suggest possible ways to improve the FIT experience, particularly regarding communication about the test and its results.

Improving the diagnostic process for patients with possible bladder and kidney cancer: a mixed-methods study to identify potential missed diagnostic opportunities.

BACKGROUND: Patients with bladder and kidney cancer may experience diagnostic delays. AIM: To identify patterns of suboptimal care and contributors of potential missed diagnostic opportunities (MDOs). DESIGN AND SETTING: Prospective, mixed-methods study recruiting participants from nine general practices in Eastern England between June 2018 and October 2019. METHOD: Patients with possible bladder and kidney cancer were identified using eligibility criteria based on National Institute for Health and Care Excellence (NICE) guidelines for suspected cancer. Primary care records were reviewed at recruitment and at 1 year for data on symptoms, tests, referrals, and diagnosis. Referral predictors were examined using logistic regression. Semi-structured interviews were undertaken with 15 patients to explore their experiences of the diagnostic process, and these were analysed thematically. RESULTS: Participants (n = 940) were mostly female (n = 657, 69.9%), with a median age of 71 years (interquartile range 64-77 years). In total, 268 (28.5%) received a referral and 465 (48.5%) had a final diagnosis of urinary tract infection (UTI). There were 33 (3.5%) patients who were diagnosed with cancer, including prostate (n = 17), bladder (n = 7), and upper urothelial tract (n = 1) cancers. Among referred patients, those who had a final diagnosis of UTI had the longest time to referral (median 81.5 days). Only one-third of patients with recurrent UTIs were referred despite meeting NICE referral guidelines. Qualitative findings revealed barriers during the diagnostic process, including inadequate clinical examination, female patients given repeated antibiotics without clinical reviews, and suboptimal communication of test results to patients. CONCLUSION: Older females with UTIs might be at increased risk of MDOs for cancer. Targeting barriers during the initial diagnostic assessment and follow-up might improve quality of diagnosis.

Respite and connection: Autistic adults' reflections upon nature and well-being during the Covid-19 pandemic.

LAY ABSTRACT: The Covid-19 pandemic and associated lockdowns provided opportunities to spend time in nature, with many people reporting that this benefitted their well-being. However, existing research from the pandemic period has focused on the way general populations experienced nature; less is known about how autistic people used nature to support their well-being during the pandemic. We created a survey that invited autistic adults living in the United Kingdom to reply to text box questions. A total of 127 people responded to our survey; we analysed their responses using a method called reflexive thematic analysis and developed themes based on patterns among all the responses. We developed two themes: respite in nature and connecting amid widespread disconnection. For some autistic adults during the pandemic, nature provided physical distance from others or from crowded homes, which helped them reduce their stress. In addition, some participants felt more psychologically connected to nature itself during the pandemic, while for others, nature served as a way of connecting with others during a potentially isolating time. These findings are important for autistic people and their families and carers who may want to seek out nature-based activities to support well-being in the wake of the pandemic.

Proactive breast cancer risk assessment in primary care: a review based on the principles of screening.

In the UK, the National Institute for Health and Care Excellence (NICE) recommends that women at moderate or high risk of breast cancer be offered risk-reducing medication and enhanced breast screening/surveillance. In June 2022, NICE withdrew a statement recommending assessment of risk in primary care only when women present with concerns. This shift to the proactive assessment of risk substantially changes the role of primary care, in effect paving the way for a primary care-based screening programme to identify those at moderate or high risk of breast cancer. In this article, we review the literature surrounding proactive breast cancer risk assessment within primary care against the consolidated framework for screening. We find that risk assessment for women under 50 years currently satisfies many of the standard principles for screening. Most notably, there are large numbers of women at moderate or high risk currently unidentified, risk models exist that can identify those women with reasonable accuracy, and management options offer the opportunity to reduce breast cancer incidence and mortality in that group. However, there remain a number of uncertainties and research gaps, particularly around the programme/system requirements, that need to be addressed before these benefits can be realised.

Agreement between patient's description of abdominal symptoms of possible upper gastrointestinal cancer and general practitioner consultation notes: a qualitative analysis of video-recorded UK primary care consultation data.

INTRODUCTION: Abdominal symptoms are common in primary care but infrequently might be due to an upper gastrointestinal (UGI) cancer. Patients' descriptions may differ from medical terminology used by general practitioners (GPs). This may affect how information about abdominal symptoms possibly due to an UGI cancer are documented, creating potential missed opportunities for timely investigation. OBJECTIVES: To explore how abdominal symptoms are communicated during primary care consultations, and identify characteristics of patients' descriptions that underpin variation in the accuracy and completeness with which they are documented in medical records. METHODS AND ANALYSIS: Primary care consultation video recordings, transcripts and medical records from an existing dataset were screened for adults reporting abdominal symptoms. We conducted a qualitative content analysis to capture alignments (medical record entries matching patient verbal and non-verbal descriptions) and misalignments (symptom information omitted or differing from patient descriptions). Categories were informed by the Calgary-Cambridge guide's 'gathering information' domains and patterns in descriptions explored. RESULTS: Our sample included 28 consultations (28 patients with 18 GPs): 10 categories of different clinical features of abdominal symptoms were discussed. The information GPs documented about these features commonly did not match what patients described, with misalignments more common than alignments (67 vs 43 instances, respectively). Misalignments often featured patients using vague descriptors, figurative speech, lengthy explanations and broad hand gestures. Alignments were characterised by patients using well-defined terms, succinct descriptions and precise gestures for symptoms with an exact location. Abdominal sensations reported as 'pain' were almost always documented compared with expressions of 'discomfort'. CONCLUSIONS: Abdominal symptoms that are well defined or communicated as 'pain' may be more salient to GPs than those expressed vaguely or as 'discomfort'. Variable documentation of abdominal symptoms in medical records may have implications for the development of clinical decision support systems and decisions to investigate possible UGI cancer.

How do hospital inpatients conceptualise patient safety? A qualitative interview study using constructivist grounded theory.

BACKGROUND: Efforts to involve patients in patient safety continue to revolve around professionally derived notions of minimising clinical risk, yet evidence suggests that patients hold perspectives on patient safety that are distinct from clinicians and academics. This study aims to understand how hospital inpatients across three different specialties conceptualise patient safety and develop a conceptual model that reflects their perspectives. METHODS: A qualitative semi-structured interview study was conducted with 24 inpatients across three clinical specialties (medicine for the elderly, elective surgery and maternity) at a large central London teaching hospital. An abbreviated form of constructivist grounded theory was employed to analyse interview transcripts. Constant comparative analysis and memo-writing using the clustering technique were used to develop a model of how patients conceptualise patient safety. RESULTS: While some patients described patient safety using terms consistent with clinical/academic definitions, patients predominantly conceptualised patient safety in the context of what made them 'feel safe'. Patients' feelings of safety arose from a range of care experiences involving specific actors: hospital staff, the patient, their friends/family/carers, and the healthcare organisation. Four types of experiences contributed to how patients conceptualise safety: actions observed by patients; actions received by patients; actions performed by patients themselves; and shared actions involving patients and other actors in their care. CONCLUSIONS: Our findings support the need for a patient safety paradigm that is meaningful to all stakeholders, incorporating what matters to patients to feel safe in hospital. Additional work should explore and test how the proposed conceptual model can be practically applied and implemented to incorporate the patient conceptualisation of patient safety into everyday clinical practice.

Enhancing the BOADICEA cancer risk prediction model to incorporate new data on RAD51C, RAD51D, BARD1 updates to tumour pathology and cancer incidence.

BACKGROUND: BOADICEA (Breast and Ovarian Analysis of Disease Incidence and Carrier Estimation Algorithm) for breast cancer and the epithelial tubo-ovarian cancer (EOC) models included in the CanRisk tool (www.canrisk.org) provide future cancer risks based on pathogenic variants in cancer-susceptibility genes, polygenic risk scores, breast density, questionnaire-based risk factors and family history. Here, we extend the models to include the effects of pathogenic variants in recently established breast cancer and EOC susceptibility genes, up-to-date age-specific pathology distributions and continuous risk factors. METHODS: BOADICEA was extended to further incorporate the associations of pathogenic variants in BARD1, RAD51C and RAD51D with breast cancer risk. The EOC model was extended to include the association of PALB2 pathogenic variants with EOC risk. Age-specific distributions of oestrogen-receptor-negative and triple-negative breast cancer status for pathogenic variant carriers in these genes and CHEK2 and ATM were also incorporated. A novel method to include continuous risk factors was developed, exemplified by including adult height as continuous. RESULTS: BARD1, RAD51C and RAD51D explain 0.31% of the breast cancer polygenic variance. When incorporated into the multifactorial model, 34%-44% of these carriers would be reclassified to the near-population and 15%-22% to the high-risk categories based on the UK National Institute for Health and Care Excellence guidelines. Under the EOC multifactorial model, 62%, 35% and 3% of PALB2 carriers have lifetime EOC risks of <5%, 5%-10% and >10%, respectively. Including height as continuous, increased the breast cancer relative risk variance from 0.002 to 0.010. CONCLUSIONS: These extensions will allow for better personalised risks for BARD1, RAD51C, RAD51D and PALB2 pathogenic variant carriers and more informed choices on screening, prevention, risk factor modification or other risk-reducing options.

Views of advance care planning in older hospitalized patients following an emergency admission: A qualitative study.

BACKGROUND: There is increasing evidence of the need to consider advance care planning (ACP) for older adults who have been recently admitted to hospital as an emergency. However, there is a gap in knowledge regarding how to facilitate ACP following acute illness in later life. AIM/OBJECTIVES: To explore the perceived impact of ACP on the lives of older persons aged 70+ who have been acutely admitted to hospital. METHOD: Semi-structured qualitative interviews were conducted with older adults aged 70+ who were admitted to hospital as an emergency. Thematic analysis was enhanced by dual coding and exploration of divergent views within an interdisciplinary team. RESULTS: Twenty participants were interviewed. Thematic analysis generated the following themes: (1) Bespoke planning to holistically support a sense of self, (2) ACP as a socio-cultural phenomenon advocating for older persons rights, (3) The role of personal relationships, (4) Navigating unfamiliar territory and (5) Harnessing resources. CONCLUSION: These findings indicate that maintaining a sense of personal identity and protecting individuals' wishes and rights during ACP is important to older adults who have been acutely unwell. Following emergency hospitalization, older persons believe that ACP must be supported by a network of relationships and resources, improving the likelihood of adequate preparation to navigate the uncertainties of future care in later life. Therefore, emergency hospitalization in later life, and the uncertainty that may follow, may provide a catalyst for patients, carers and healthcare professionals to leverage existing or create new relationships and target resources to enable ACP, in order to uphold older persons' identity, rights and wishes following acute illness.

Contributions of the NICHD neonatal research network's generic database to documenting and advancing the outcomes of extremely preterm infants.

The Eunice Kennedy Shriver National Institute of Child Health and Human Development Neonatal Research Network (NRN) maintains a database of extremely preterm infants known as the Generic Database (GDB). Begun in 1987, this database now includes more than 91,000 infants, most of whom are extremely preterm (<29 weeks gestation). The GDB has been the backbone of the NRN, providing high quality, prospectively collected data to study the changing epidemiology of extreme prematurity and its outcomes over time. In addition, GDB data have been used to generate hypotheses for prospective studies and to develop new clinical trials by providing information about the numbers and characteristics of available subjects and the expected event rates for conditions and complications to be studied. Since its inception, the GDB has been the basis of more than 200 publications in peer-reviewed journals, many of which have had a significant impact on the field of neonatology.

Early neurodevelopmental follow-up in the NICHD neonatal research network: Advancing neonatal care and outcomes, opportunities for the future.

At the inception of the Eunice Kennedy Shriver National Institute of Child Health and Development Neonatal Research Network (NRN), provision of care for extremely preterm (EPT) infants was considered experimental. The NRN Follow-up Study Group, initiated in 1993, developed infrastructure with certification processes and standards, allowing the NRN to assess 2-year outcomes for EPT and to provide important metrics for randomized clinical trials. This chapter will review the NRN Follow-up Study Group's contributions to understanding factors related to improved neurodevelopmental, behavioral, and social-emotional outcomes of EPT infants. We will also discuss follow up challenges, including reassessing which outcomes are most meaningful for parents and investigators. Finally, we will explore how outcome studies have informed clinical decisions and ethical considerations, given limitations of prediction of complex later childhood outcomes from early neurodevelopmental findings.