Diagnostic delay in patients from the international map of axial spondyloarthritis: geographic, socio-demographic and disease-related factors.

OBJECTIVES: To assess diagnostic delay and its associated factors globally, in a large sample of patients included in the International Map of Axial Spondyloarthritis (IMAS). METHODS: IMAS is a cross-sectional online survey (2017-2022) of 5,557 axSpA patients from 27 countries. Diagnostic delay was calculated as the difference between age at diagnosis and age at first symptom onset reported by patients. Associations between diagnostic delay and regions, sociodemographic characteristics, as well as disease-related factors were explored through univariable and multivariable linear regression analysis. RESULTS: Data from 5,327 patients who reported data on diagnostic delay in IMAS survey were analysed: 3,294 were from Europe, 752 from North America, 590 from Asia, 545 from Latin America, and 146 from Africa. Overall, patients reported a mean diagnostic delay of 7.4 years (median: 4.0) since symptom onset, with substantial variation across regions; being the highest delay in South Africa and the lowest in Asia. The variables associated with longer diagnostic delay in the final multivariable regression model were: younger age at symptom onset (b=-0.100), female gender (b = 2.274), being diagnosed by rheumatologist (b = 1.163), greater number of HCPs seen before diagnosis (b = 1.033), and history of uveitis (b = 1.286). CONCLUSION: In this global sample of axSpA patients, the mean diagnostic delay was 7.4 years, and showed significant differences across regions. Younger age at symptom onset, female gender, diagnosis made by a rheumatologist, greater number of HCPs seen before diagnosis, and the history of uveitis were the parameters associated with a longer diagnostic delay in axSpA patients.

Delusional infestation: a retrospective cohort study of 49 patients over a 6-year period.

Delusional infestation (DI) is the fixed false belief of pathogenic infestation of the skin or body despite no supporting medical evidence. It is a relatively rare condition with a reported prevalence of 1.48 per million people. Successful treatment can be challenging as patients are often reluctant to accept referral or involvement of psychiatric services. We report a retrospective cohort study of 49 consecutive patients with a diagnosis of DI, assessed in a regional psychodermatology service over a 6-year period. Low-dose antipsychotics (risperidone or olanzapine) were prescribed in 44 patients. We use our data to explore possible reasons why DI can be challenging to treat. Response to treatment and engagement with services is multifactorial. Our study emphasizes the importance of early assessment and supports the expansion of psychodermatology services in the UK.

The role and scope of retrieval nurse practitioners in the UK.

BACKGROUND: The first independent paediatric retrieval nurse practitioners (RNP) in the UK and Europe were appointed in 2006 in one hospital Trust. Since then, many have been appointed around the UK but the range of responsibility and scope of the role is unknown as well as possible geographical variability. AIM: The aim of this paper is to explore the role and scope of paediatric retrieval nurse practitioners in the United Kingdom (UK). METHOD: A two part questionnaire was sent to all RNPs identified by the regional retrieval/transport centres. Information was sought about the role and scope of RNPs and how the role may have changed since appointment. RNPs were asked to self-assess their own ability in a variety of technical and leadership skills. CONCLUSION: The majority of respondents felt their role had expanded since appointment. RNPs reported that they would now lead the team for any critically ill infant or child where previously they were retrieving stable or high dependency patients. Other expansions of their role included being on a middle grade tier of the medical rota, asked to undertake aeromedical transfers, providing the withdrawal of care at referring centres and non-medical independent prescribing. RELEVANCE TO PRACTICE: This survey has revealed the changing role and scope of RNPs in the UK but most importantly, the increased responsibility of the roles. Over 80% of RNPs rated their leadership skills between proficient and expert on Benner's Novice to Expert Continuum (Benner, 1984).

Ethical Care of Pregnant Patients During Labor, Delivery, and Nonobstetric Surgery.

The 4 basic principles of ethics (beneficence, nonmaleficence, autonomy, and justice) can guide clinical decision-making for the pregnant patient during labor and delivery, as well as when undergoing nonobstetric surgery. An evidence-based decision-making conversation with the patient facilitates obtaining informed consent. When maternal-fetal conflict arises, both during labor and delivery and nonobstetric surgery, beneficence-based obligations to both parties should be considered, with discussions and decisions well documented. Labor is not an impediment to women providing consent for care. A careful balance between evidence-based clinical judgment and patient autonomy is necessary when addressing cesarean delivery.

Children and young people's body mass index measures derived from routine data sources: A national data linkage study in Wales.

BACKGROUND: Routine monitoring of Body Mass Index (BMI) in general practice, and via national surveillance programmes, is essential for the identification, prevention, and management of unhealthy childhood weight. We examined and compared the presence and representativeness of children and young people's (CYPs) BMI recorded in two routinely collected administrative datasets: general practice electronic health records (GP-BMI) and the Child Measurement Programme for Wales (CMP-BMI), which measures height and weight in 4-5-year-old school children. We also assessed the feasibility of combining GP-BMI and CMP-BMI data for longitudinal analyses. METHODS: We accessed de-identified population-level GP-BMI data for calendar years 2011 to 2019 for 246,817 CYP, and CMP-BMI measures for 222,772 CYP, held within the Secure Anonymised Information Linkage Databank. We examined the proportion of CYP in Wales with at least one GP-BMI record, its distribution by child socio-demographic characteristics, and trends over time. We compared GP-BMI and CMP-BMI distributions. We quantified the proportion of children with a CMP-BMI measure and a follow-up GP-BMI recorded at an older age and explored the representativeness of these measures. RESULTS: We identified a GP-BMI record in 246,817 (41%) CYP, present in a higher proportion of females (54.2%), infants (20.7%) and adolescents. There was no difference in the deprivation profile of those with a GP-BMI measurement. 31,521 CYP with a CMP-BMI had at least one follow-up GP-BMI; those with a CMP-BMI considered underweight or very overweight were 87% and 70% more likely to have at least one follow-up GP-BMI record respectively compared to those with a healthy weight, as were males and CYP living in the most deprived areas of Wales. CONCLUSIONS: Records of childhood weight status extracted from general practice are not representative of the population and are biased with respect to weight status. Linkage of information from the national programme to GP records has the potential to enhance discussions around healthy weight at the point of care but does not provide a representative estimate of population level weight trajectories, essential to provide insights into factors determining a healthy weight gain across the early life course. A second CMP measurement is required in Wales.

The benefits of an integrated liaison psychiatry and dermatology service for complex dermatology Patients-a case series.

Psychodermatology is a specialist area which refers to the assessment and treatment of the psychosocial aspects of dermatology. This includes the management of patients with primary psychiatric disorders, psychosocial co-morbidities of existing skin disease or psychological distress caused by their skin conditions. We report the benefits and cost savings of a recent pilot of an integrated service of a consultant dermatologist and a liaison psychiatrist providing coordinated care to complex psychodermatology patients.

Dexmedetomidine sedation for laryngeal framework surgery.

OBJECTIVES: Sedation for laryngeal framework surgery has lacked easy modulation between appropriate pain control, airway protection, and the alertness appropriate for vocal testing. Our objective was to determine whether dexmedetomidine hydrochloride could safely and effectively be used as the sole intravenous anesthetic agent in conjunction with local anesthesia for laryngeal framework procedures. METHODS: We undertook a prospective review of 14 patients who underwent laryngeal framework surgery with dexmedetomidine anesthesia in 2004 and 2005. All dexmedetomidine doses, sedation levels, and vital signs, including blood pressure, heart rate, respiratory rate, and oxygen saturation level, were recorded every 15 minutes by the anesthesiologist throughout the duration of the procedures. Operative conditions were noted by the surgeon, focusing special attention on airway protection, patient arousability, and patient comfort. RESULTS: Dexmedetomidine sedation produced hemodynamic and respiratory values that were maintained near preoperative values, and overall pharyngeal-laryngeal integrity provided superior operating conditions for the patient and the operating surgeon. CONCLUSIONS: We believe that dexmedetomidine provides excellent sedative and operative conditions for awake laryngeal framework procedures. Coupled with local anesthesia, dexmedetomidine produced virtually no undesirable hemodynamic or respiratory effects, while allowing for adequate sedation the majority of the time. The operative conditions were markedly improved over those of previous standard monitored anesthesia regimens.

Pushing boundaries in paediatric intensive care: training as a paediatric retrieval nurse practitioner.

Traditionally in the UK, the transportation of the critically ill child to a paediatric intensive care unit has been carried out by a medically led team of doctors and nurses. However, in countries such as the USA and Canada, appropriately trained nurse practitioners have proven to be competent in the transportation of these vulnerable children. This nurse-led team model has also been shown to be successful in the speciality of neonatal care in the UK. The impact of changes in the National Health Service (NHS) has led to an increased demand for the transportation of the child requiring paediatric intensive or high-dependency care, the lifting of restrictions on nursing practice and the reduction of doctors' hours in keeping with the European Working Time Directive. This has led to one NHS Trust in the UK developing the role of paediatric retrieval nurse practitioners (RNP): nurses who lead the retrieval team. The purpose of this article is to describe a pilot initiative to develop the role of RNPs. The comprehensive process of recruitment, training and assessment of competency will be detailed. Personal reflection on the project will also explore the pertinent nursing issues around; role impact and definition, conflict and change management, communication, legislation and personal and professional growth. Recommendations for future initiatives will also be explored.

Comparing the influence of directly vs. indirectly encountered post-event misinformation on eyewitness remembering.

Some research has found a stronger influence of directly (face-to-face; co-witness; 'social') vs. indirectly (through written reports, 'non-social') encountered post-event misinformation on eyewitness memory reports, whereas other research finds no (big) difference. We argue and demonstrate that a crucial but so far neglected variable underlying this difference is memory for the misleading information itself. In a study with N=120 participants who encountered misinformation directly or indirectly, we found misinformation retention (as assessed in a separate test) to be positively associated with a broad range of misinformation effects. Influence type (direct vs. indirect), however, did not moderate the misinformation effect in terms of memory for original details, and misinformation endorsement was even weaker in the direct influence condition. In our view, these findings reflect differential conversion of retained misinformation into test performance. Other than this, influence type had essentially no effects on remembering; nor did an additional post-warning manipulation.

Selenium and ocular health in New Zealand.

Selenium is an essential mineral and severe selenium deficiency is known to cause significant health problems. It has been well documented that New Zealand soil is low in selenium. Recent studies have addressed the roles of selenoproteins in the eyes, with evidence suggesting that selenium supplementation may have a role in preventing cataract formation and age-related maculopathy. This paper summarises the role of selenium in ocular and general health and discusses selenium supplementation in a New Zealand specific context.

AMEG: the new SETAC advisory group on aquatic macrophyte ecotoxicology.

INTRODUCTION AND BACKGROUND: Primary producers play critical structural and functional roles in aquatic ecosystems; therefore, it is imperative that the potential risks of toxicants to aquatic plants are adequately assessed in the risk assessment of chemicals. The standard required macrophyte test species is the floating (non-sediment-rooted) duckweed Lemna spp. This macrophyte species might not be representative of all floating, rooted, emergent, and submerged macrophyte species because of differences in the duration and mode of exposure; sensitivity to the specific toxic mode of action of the chemical; and species-specific traits (e.g., duckweed's very short generation time). DISCUSSION AND PERSPECTIVES: These topics were addressed during the workshop entitled "Aquatic Macrophyte Risk Assessment for Pesticides" (AMRAP) where a risk assessment scheme for aquatic macrophytes was proposed. Four working groups evolved from this workshop and were charged with the task of developing Tier 1 and higher-tier aquatic macrophyte risk assessment procedures. Subsequently, a SETAC Advisory Group, the Macrophyte Ecotoxicology Group (AMEG) was formed as an umbrella organization for various macrophyte working groups. The purpose of AMEG is to provide scientifically based guidance in all aspects of aquatic macrophyte testing in the laboratory and field, including prospective as well as retrospective risk assessments for chemicals. As AMEG expands, it will begin to address new topics including bioremediation and sustainable management of aquatic macrophytes in the context of ecosystem services.

Work-related asthma symptoms and attitudes to the workplace.

BACKGROUND: The Health & Safety Executive estimate that between 1500-3000 UK workers develop asthma through potentially avoidable workplace exposures each year. AIMS: To assess the perception of health, safety and the work environment by workers with symptoms suggestive of occupational asthma. METHODS: A total of 97 workers referred to hospital specialists with symptoms suggestive of occupational asthma were studied in order to investigate their attitudes to the workplace, safety and health. A qualitative study design using semi-structured telephone interviews at 2 months and 12 months following enrolment was used at 6 national UK centres with a special interest in occupational asthma. RESULTS: Many workers in the study felt let down by the workplace and management and perceived that a lack of health and safety measures had contributed to the development of their asthma symptoms. Many workers felt that their employers were 'uncaring' and were pursuing or considering medico-legal cases against them. CONCLUSIONS: Workers' perception of risk influences their behaviour in the workplace, and their own health beliefs potentially create barriers to changing this. It is essential to consider workers' perceptions when developing strategies to effect change within the workplace.

Are we failing workers with symptoms suggestive of occupational asthma?

AIMS: To assess the route to secondary care for patients with possible occupational asthma, and to document the duration of workrelated symptoms and referral times. METHODS: Consecutive patients with suspected occupational asthma were recruited to a case series from six secondary care clinics with an interest in occupational asthma. Semi-structured interviews were performed and hospital case notes were reviewed to summarise relevant investigations and diagnosis. RESULTS: 97 patients were recruited, with a mean age of 44.2 years (range 24-64), 51 of whom (53%) had occupational asthma confirmed as a diagnosis. Most (96%) had consulted their general practitioner (GP) at least once with work-related respiratory symptoms, although these had been present for a mean of 44.6 months (range 0-320 months) on presentation to secondary care. Patients experienced a mean delay for assessment in secondary care of 4 years (range 1-27 years) following presentation in primary care. CONCLUSIONS: Significant diagnostic delay currently occurs for patients with occupational asthma in the UK.